Things are changing for this family. My kids started their Christmas break last Friday and that is always a difficult adjustment for us. Children with special needs can struggle with transitions and change and ours are certainly no different. Angela has an especially hard time when we adjust our schedule during a school vacation. Tantrums, meltdowns, frustration, and more. Did I mention that change is HARD? During school vacations, everything is hard!
We bought the Elf on the Shelf for the first time this year. I have resisted until now, but Angela BEGGED for it, and I gave in. Every night, we have to come up with new mischief for our elf, and it actually has been more fun than we expected. The most fun is that Ang really believes the Elf is wandering the house at night causing trouble. This week, on the eve of Toby's required (by his age) colonoscopy, our elf "pooped" chocolate chips-one of Angela's favorites so far. A really nice benefit of having a child with special needs......they tend to "believe" much longer than their peers.
Another change on the horizon is that Levi will be moving back to our home in Clatskanie next month. So many feelings. We cannot wait to have our son home. He is excelling in his current program and he has grown and matured beyond our expectations. He is ready, and we are too. That said, there is lots of apprehension about his return to a school that has not been a good fit for him in the past. We are grateful for the school staff and their efforts to help us plan strategies to help him be successful. They want this to work, and so do we. Time will tell and that is all I can say. This is the next step in the journey and I have to trust God to chart the course.
In another resignation to change on the horizon, we have scheduled a visit to Perry Tech in Yakima to help Josh begin the application process to attend school there next year. How can I let him go? This child, who taught us that love and family go far beyond genetics, and that love, at first sight, does exist. He will leave our home next year and I am not sure how I will cope. Toby and I were head over heels for him from the moment he entered our home, with a goofy smile and unwavering attachment to us from day one. It was as if HE adopted US, and he has brought us so much joy. How can the time have passed so fast? Those of you who have had children graduate high school and move on know that it never gets any easier, no matter how many times you do it.
I have to admit that I have never been very good at change. I try to put on a happy face, but change is HARD for me. As I approach these major changes, my only option is to pray. This is not something I can do alone. Thank you, my friends, for listening and supporting me through this crazy life!
Friday, December 22, 2017
Thursday, November 30, 2017
Rocking the Research
Since Angela's surgery, we have been anxious to participate in research that will drive innovation and advancement for children with special needs. Angela has been included in several medical and educational research projects over the past few years and we are always looking for new opportunities.
A few weeks ago, I was contacted by a research group that was preparing for a project authorized by a major designer clothing company. The company is considering a line of adaptive clothing for children and adults with disabilities. I responded and was interviewed for the program and we were accepted!! I have always believed strongly that children with special needs should have access to the same fashion as other children, but children who require orthotics, or have physical limitations often have fewer clothing options available to them. This is frustrating for me and I am always on the lookout for cute, yet practical clothes for Miss Angela.
Two weeks ago, our Tommy Hilfiger package arrived and I almost cried. Really. The clothes are THAT good. They are cute and do not look "special". The closures have magnets sewn into the fabric instead of buttons or snaps, and the (skinny) jeans have the magnets in the seam so the pants open to fit easily over Angela's leg brace. The long-sleeved t-shirt has the same type of closure on the neckline so she can get it on easily with one hand. I am posting pictures of her cuteness below, even though you can't see the magnets. Isn't she adorable?
There is a dress, too, but I have not captured it in a photo yet. I guess I really raved about how much I love the clothes because I was asked to send a video to share my thoughts with Tommy. I am pretty sure we are besties now, don't you think? But seriously, I am so honored that we can be included in this project. I am going to be furiously advocating for an adaptive clothing line to be available for all. I will keep you posted......
A few weeks ago, I was contacted by a research group that was preparing for a project authorized by a major designer clothing company. The company is considering a line of adaptive clothing for children and adults with disabilities. I responded and was interviewed for the program and we were accepted!! I have always believed strongly that children with special needs should have access to the same fashion as other children, but children who require orthotics, or have physical limitations often have fewer clothing options available to them. This is frustrating for me and I am always on the lookout for cute, yet practical clothes for Miss Angela.
Two weeks ago, our Tommy Hilfiger package arrived and I almost cried. Really. The clothes are THAT good. They are cute and do not look "special". The closures have magnets sewn into the fabric instead of buttons or snaps, and the (skinny) jeans have the magnets in the seam so the pants open to fit easily over Angela's leg brace. The long-sleeved t-shirt has the same type of closure on the neckline so she can get it on easily with one hand. I am posting pictures of her cuteness below, even though you can't see the magnets. Isn't she adorable?
There is a dress, too, but I have not captured it in a photo yet. I guess I really raved about how much I love the clothes because I was asked to send a video to share my thoughts with Tommy. I am pretty sure we are besties now, don't you think? But seriously, I am so honored that we can be included in this project. I am going to be furiously advocating for an adaptive clothing line to be available for all. I will keep you posted......
Saturday, November 4, 2017
Why Give??
Toby and I have joined the fundraising campaign for the Brain Recovery Project, and yesterday our friends and family gave an amazing $500+ to the organization. We are unspeakably touched and grateful. A Facebook page, though, cannot really capture the essence of why this organization is so important. We want you to know what you are giving to.
In early 2011, we were in the midst of a medical and bureaucratic nightmare. Our precious Angie was having siezures as long as three hours in length despite numerouse seizure medications, and the doctors had told us in no uncertain terms that her next seizure could be the last. Her prognosis was very poor. At the same time, she was trapped in foster care by a system that did not believe critically ill children were adoptable, and also believed that life-saving treatments were not appropriate for the child that we loved as our own. We were in a really bad place.
Many of you know the story........we were finally able to wade through the system and surgery was scheduled at OHSU in Portland, until the surgeon became ill and cancelled the procedure just one week before it was to happen. We scrambled for another option, despite the constraints of state medical insurance that dictated her care. We contacted Dr. Mathern, a renowned neurosurgeon at UCLA, and he agreed to see her for an evaluation. This was when I met Monika Jones, who founded the Brain Recovery Peroject with her husband, Brad. I did not know Monika, and she did not know me, but she invited me in stay in her home while we were in Los Angelas. Her son, Henry, had experienced hemispherectomy surgery and she became my lifeline. I have seen her reach countless other parents in similar ways when they were at the lowest point in the journey.We were here:
We did not end up going to UCLA because of Angie's insurance constraints, and you know the rest of the story. But, I want you to know that Monika and the Brain Recovery Project has been by our side throughout the process of helping Angie (our sweet Angela now) to recover from major brain surgery, and to navigate Life After a Miracle. The BRP is not one of thise nonprofits that solicits donations every year for an elusive mission that pulls at heartstrings but nobody really understands. The BRP is personal.
Because of the Brain Recovery Project, we have learned how to adovcate for educational services that truly fit Angela's learning style, based on her disability. At age 9, she began to read because of the information we gained about learning to read after hemispherectomy-and wonderful school support. The BRP has funded important research that informs families about how children, and adults, are impacted by major brain surgery. The organization supports innovative solutions to help children regain hand function and other skills, and they provide advocacy and support services for families through the IEP process. The BRP plans "reunions" for families so we can meet an encourage one another, and so the children can meet and form friendships with others like them. About 150 children in the U.S. undergo hemispherectomy surgery for treatment of seizures every year, and many others have other surgical measures to treat seizures. We can reach out to the BRP for help at any time as new challenges come up. And we do.
The Brain Recovery Project touches people. The results of their efforts are evident in our family's lives and in others like us, every day. If you were able to give-THANK YOU. You have touched people directly with your gift. You can see the ongoing progress of the campaign, or make a gift, by going to the link below. Our family is so grateful. I will leave you with one of my favorite pictures, taken of Angie gripping Toby's hand before she had come out of the anesthesia after surgery:
https://thebrainrecoveryproject2017.causevox.com/kara-harris
In early 2011, we were in the midst of a medical and bureaucratic nightmare. Our precious Angie was having siezures as long as three hours in length despite numerouse seizure medications, and the doctors had told us in no uncertain terms that her next seizure could be the last. Her prognosis was very poor. At the same time, she was trapped in foster care by a system that did not believe critically ill children were adoptable, and also believed that life-saving treatments were not appropriate for the child that we loved as our own. We were in a really bad place.
Many of you know the story........we were finally able to wade through the system and surgery was scheduled at OHSU in Portland, until the surgeon became ill and cancelled the procedure just one week before it was to happen. We scrambled for another option, despite the constraints of state medical insurance that dictated her care. We contacted Dr. Mathern, a renowned neurosurgeon at UCLA, and he agreed to see her for an evaluation. This was when I met Monika Jones, who founded the Brain Recovery Peroject with her husband, Brad. I did not know Monika, and she did not know me, but she invited me in stay in her home while we were in Los Angelas. Her son, Henry, had experienced hemispherectomy surgery and she became my lifeline. I have seen her reach countless other parents in similar ways when they were at the lowest point in the journey.We were here:
We did not end up going to UCLA because of Angie's insurance constraints, and you know the rest of the story. But, I want you to know that Monika and the Brain Recovery Project has been by our side throughout the process of helping Angie (our sweet Angela now) to recover from major brain surgery, and to navigate Life After a Miracle. The BRP is not one of thise nonprofits that solicits donations every year for an elusive mission that pulls at heartstrings but nobody really understands. The BRP is personal.
Because of the Brain Recovery Project, we have learned how to adovcate for educational services that truly fit Angela's learning style, based on her disability. At age 9, she began to read because of the information we gained about learning to read after hemispherectomy-and wonderful school support. The BRP has funded important research that informs families about how children, and adults, are impacted by major brain surgery. The organization supports innovative solutions to help children regain hand function and other skills, and they provide advocacy and support services for families through the IEP process. The BRP plans "reunions" for families so we can meet an encourage one another, and so the children can meet and form friendships with others like them. About 150 children in the U.S. undergo hemispherectomy surgery for treatment of seizures every year, and many others have other surgical measures to treat seizures. We can reach out to the BRP for help at any time as new challenges come up. And we do.
The Brain Recovery Project touches people. The results of their efforts are evident in our family's lives and in others like us, every day. If you were able to give-THANK YOU. You have touched people directly with your gift. You can see the ongoing progress of the campaign, or make a gift, by going to the link below. Our family is so grateful. I will leave you with one of my favorite pictures, taken of Angie gripping Toby's hand before she had come out of the anesthesia after surgery:
https://thebrainrecoveryproject2017.causevox.com/kara-harris
Sunday, October 29, 2017
It Is Not How It Looks
It is a well-known fact that Facebook posts are carefully chosen to showcase how wonderful our lives are. We post our children's sports victories, school awards, prom pictures, and weddings. I do it too. Let's be honest......we all do. I love to see your best times and your beautiful families. Very seldom do we see a picture of a child having a meltdown or punching a sibling.
I am going to suggest that parents of children with special needs are most guilty of this. I know I am. We want our kids to have typical experiences and milestone moments as much as anyone else. We want our kids to enjoy the school assembly, the birthday party, and the holiday traditions like every other kid. But they don't.
This point was made clear to me during our annual family outing to the pumpkin patch yesterday. Angela was excited about the trip and talked about it with anticipation all week long. The reality of the trip was that she hated almost every second, starting with getting her boots on at home before we left. That was a screaming, foot stomping disaster. She did not want a pony ride, a tattoo, face painting, or to shoot a pumpkin through a huge gun. Her protests made her feelings very apparent to anyone nearby. She grudgingly picked out a pumpkin with Josh and Levi encouraging her. By the time we left, she was begging us to take her home. We did get one picture of her having fun:
Angela did not enjoy our last trip to the pumpkin patch, either. If I dig through my memory, I would probably realize that she never has. I did recall her monster meltdown and the school Fall Carnival last year and we, wisely, skipped it this time. Angela also is not a big fan of trick-or-treating and we limit her exposure on Halloween. But the pumpkin patch..........it is a family tradition.
What to do? We love our family tradition, but it is probably not worth it to make her miserable over it. Special events and activities are major problem for every other family I know who has a child with special needs. We are all struggling. I am not saying this to make you pity us. It is just something that many people take for granted-the ability to enjoy family outings without upset.
I will still probably post our happy pictures on Facebook, because they are real. They just do not tell the whole story. It is not how it looks.
I am going to suggest that parents of children with special needs are most guilty of this. I know I am. We want our kids to have typical experiences and milestone moments as much as anyone else. We want our kids to enjoy the school assembly, the birthday party, and the holiday traditions like every other kid. But they don't.
This point was made clear to me during our annual family outing to the pumpkin patch yesterday. Angela was excited about the trip and talked about it with anticipation all week long. The reality of the trip was that she hated almost every second, starting with getting her boots on at home before we left. That was a screaming, foot stomping disaster. She did not want a pony ride, a tattoo, face painting, or to shoot a pumpkin through a huge gun. Her protests made her feelings very apparent to anyone nearby. She grudgingly picked out a pumpkin with Josh and Levi encouraging her. By the time we left, she was begging us to take her home. We did get one picture of her having fun:
Angela did not enjoy our last trip to the pumpkin patch, either. If I dig through my memory, I would probably realize that she never has. I did recall her monster meltdown and the school Fall Carnival last year and we, wisely, skipped it this time. Angela also is not a big fan of trick-or-treating and we limit her exposure on Halloween. But the pumpkin patch..........it is a family tradition.
What to do? We love our family tradition, but it is probably not worth it to make her miserable over it. Special events and activities are major problem for every other family I know who has a child with special needs. We are all struggling. I am not saying this to make you pity us. It is just something that many people take for granted-the ability to enjoy family outings without upset.
I will still probably post our happy pictures on Facebook, because they are real. They just do not tell the whole story. It is not how it looks.
Wednesday, October 25, 2017
Choosing Hope
I came across one of my favorite quotes today. Christopher Reeves, who I admire for his courage and strength, said, "Once you choose hope, anything is possible". Hope is one of my favorite words, and yet often I forget to practice it.
It is easy to get overwhelmed by the phone calls that need to be made and the appointments and referrals and therapies. Medication, orthodontics, homework, and stretching routines. My job, college classes (what was I thinking!), and elderly parents.
I am grateful for the team of people who teach, care for, and encourage Miss Angela. There so many!! When I am distracted, they are not. I am humbled when I receive phone calls, texts, and emails about something new that Angela's school team wants to try. It is almost always a strategy to give her more independence and to advance her ever-growing skill set. And, it is almost always something I did not consider possible for her. It happened this week and I had to consider whether I have been holding her back. with my distractions and my concerns.
I don't mean to limit her, I really don't. I, of all people, know how incredibly amazing she is. How far she has come. I just think of her as needing a lot of help. In some ways, she does. But it is time for me to realize that she is very able in so many ways and she wants to be independent. This weekend, Toby and I came downstairs to find she had made us coffee!!
I thought that I was pretty progressive and well-informed about Angela's needs. Now, I realize that it is time to stop worrying about regression and the return of seizures, or worse. Time to hope and time to celebrate. And to be grateful, so grateful, for the people who ignore what could be and focus on the girl in front of them who can do pretty much anything she decides to do.
It is easy to get overwhelmed by the phone calls that need to be made and the appointments and referrals and therapies. Medication, orthodontics, homework, and stretching routines. My job, college classes (what was I thinking!), and elderly parents.
I am grateful for the team of people who teach, care for, and encourage Miss Angela. There so many!! When I am distracted, they are not. I am humbled when I receive phone calls, texts, and emails about something new that Angela's school team wants to try. It is almost always a strategy to give her more independence and to advance her ever-growing skill set. And, it is almost always something I did not consider possible for her. It happened this week and I had to consider whether I have been holding her back. with my distractions and my concerns.
I don't mean to limit her, I really don't. I, of all people, know how incredibly amazing she is. How far she has come. I just think of her as needing a lot of help. In some ways, she does. But it is time for me to realize that she is very able in so many ways and she wants to be independent. This weekend, Toby and I came downstairs to find she had made us coffee!!
I thought that I was pretty progressive and well-informed about Angela's needs. Now, I realize that it is time to stop worrying about regression and the return of seizures, or worse. Time to hope and time to celebrate. And to be grateful, so grateful, for the people who ignore what could be and focus on the girl in front of them who can do pretty much anything she decides to do.
Saturday, October 14, 2017
All of the Lasts
As a parent of a high school Senior, I have entered the year of the lasts. The last first day of school, last Homecoming Dance, last basketball season.....you get it. I have been here three times before but it does not get any easier. In fact, maybe it is harder because I know how final the end of high school really is, despite the great things that can come after. My child has started the leaving process.
There is so much going on in all of our kids lives right now. Really good things. I will share more soon, but for now I will focus on Josh and helping to make the next few months meaningful for him and for our family. Some you have known Josh for years, and some only know him from knowing me. Let me tell you about him....
Josh is the kindest boy I know. Really. He has empathy for other people and he LOVES his family. Josh is everyone's friend. He does not compete for attention, and he is as humble as they come. His love and compassion for his younger brother and sister has been known to bring me to tears. His nephew's hero-worship of him is endearing.
This week is Josh's last Homecoming week. He gave it his all and even sported a tutu for the Homecoming game:
And then, tonight, was his last Homecoming dance:
I look like a little old lady, don't I? Well, I may be but I still have a few more years of high school dances left in me!
I am going to treasure this year. I have enjoyed every single moment with this boy, since the moment he came into our home and our family. He stole our hearts the very first day. This is not a year to grieve, but a year to celebrate, and to make every single "last" the best one yet.
There is so much going on in all of our kids lives right now. Really good things. I will share more soon, but for now I will focus on Josh and helping to make the next few months meaningful for him and for our family. Some you have known Josh for years, and some only know him from knowing me. Let me tell you about him....
Josh is the kindest boy I know. Really. He has empathy for other people and he LOVES his family. Josh is everyone's friend. He does not compete for attention, and he is as humble as they come. His love and compassion for his younger brother and sister has been known to bring me to tears. His nephew's hero-worship of him is endearing.
This week is Josh's last Homecoming week. He gave it his all and even sported a tutu for the Homecoming game:
And then, tonight, was his last Homecoming dance:
I look like a little old lady, don't I? Well, I may be but I still have a few more years of high school dances left in me!
I am going to treasure this year. I have enjoyed every single moment with this boy, since the moment he came into our home and our family. He stole our hearts the very first day. This is not a year to grieve, but a year to celebrate, and to make every single "last" the best one yet.
Monday, October 2, 2017
Breaking the Glass Ceiling
When Angela had her brain surgery six years ago we had so many questions. Even though she was only three years old at the time, one thing I really wanted to know was, "Will she read?". As an avid reader, this was really important to me, although not as important as having her overcome seizures and live a healthy life. Or having friends, or walking and talking. But, I wanted to know. The doctors were not willing to make any predictions because each child responds to major brain surgery differently. I would have to wait.
Since starting Kindergarten, Angela has made steady pre-literacy gains each year. She eventually learned the letters of the alphabet and by second grade last year she could recognize a few sight words-and a few more by the end of the year, but it felt like there was a glass ceiling on her reading. We could see what was possible up above but she couldn't quite get there. Or could she?
Until recently, we have not pushed Angela to do homework. Just getting through the school day is so exhausting for her and she is often asleep by 5:30 or 6. We recently decided to have her read and write a few sentences each night along with the rest of her third grade class. I am hoping my video posts here so you can hear what I heard tonight:
If you do not have tears, please check your pulse. This milestone is proof that ANYTHING is possible. Never give up on a skill or a change that seems to be taking too long. Angela's school team made a huge investment to make this happen. When traditional teaching methods weren't working, they found a better way for her. They cheered and encouraged, and they will continue to support her progress. This has been a team effort that Toby and I have watched from the sidelines. We do not take any credit.
In the words of Walt Disney, "The difference between winning and losing is most often not quitting." Angela Hope Harris never quits. The daily tasks that we take for granted, just because we can, take tremendous effort for someone with Angela's challenges . Dressing, bathing, eating, walking, learning-it is all hard. And she Never.Gives.Up. This girl is my hero.
Since starting Kindergarten, Angela has made steady pre-literacy gains each year. She eventually learned the letters of the alphabet and by second grade last year she could recognize a few sight words-and a few more by the end of the year, but it felt like there was a glass ceiling on her reading. We could see what was possible up above but she couldn't quite get there. Or could she?
Until recently, we have not pushed Angela to do homework. Just getting through the school day is so exhausting for her and she is often asleep by 5:30 or 6. We recently decided to have her read and write a few sentences each night along with the rest of her third grade class. I am hoping my video posts here so you can hear what I heard tonight:
In the words of Walt Disney, "The difference between winning and losing is most often not quitting." Angela Hope Harris never quits. The daily tasks that we take for granted, just because we can, take tremendous effort for someone with Angela's challenges . Dressing, bathing, eating, walking, learning-it is all hard. And she Never.Gives.Up. This girl is my hero.
Thursday, September 28, 2017
I Am Back!!
I have made a decision and I AM BACK!!! Now that it is over, I can share why I had to go......
Two years ago, we learned that our son had been a victim of a crime at the hands of a young adult neighbor. I do not want to write the details, but if you are one of the few who has not read about the story, you can do so here:
https://www.thechiefnews.com/news/lumijarvi-takes-sex-crime-plea/article_97f3ef4e-a331-11e7-b2b6-6bbe0f089d76.html.
Or here:
https://www.thechiefnews.com/news/sex-offender-given-plea-deal-despite-history/article_22b562f0-a3c5-11e7-9df8-2b479df09ed8.html
During the court case, we learned that a relative of the perpetrator shared Levi's protected health information to help the defense to discredit his testimony-despite the fact that a confession had already been made. The relative was a service provider for Levi before we learned of the crime and the defense tried to use the private information to make Levi look like a monster. As you can imagine, this was pretty devastating given the assurances we all get that our protected health information will never be shared due to HIPAA law. The relative was fired but then they decided to prey on my blog and to share more private information about Levi with the defense. After all of their efforts, the judge determined that nothing they suggested was true and we arrived where we are today.
The crimes in the case are disgusting. There are multiple victims over a span of too many years. Nobody wins in a case like this and everyone loses. Everyone. I cannot imagine being a parent whose child has performed these horrific acts. Or a child who has experienced it. Or a lawyer who defends it. We are grateful for the young person who came forward when she realized that Levi was being groomed to be a pawn in the game. She told when he was too afraid to and her courage is the reason he was not victimized further.
I have said this before but I will say it again. Victims are victims. Period. We are grateful that this two-year ordeal is over and we are ready to move on. This experience will not defeat us or define us. Levi is thriving and he is more than ready to move on. Thank you, my friends, for supporting us and for reaching out as the case came to an end this week. I can't wait to catch you up on our Life After a Miracle. There is so much to tell!
Two years ago, we learned that our son had been a victim of a crime at the hands of a young adult neighbor. I do not want to write the details, but if you are one of the few who has not read about the story, you can do so here:
https://www.thechiefnews.com/news/lumijarvi-takes-sex-crime-plea/article_97f3ef4e-a331-11e7-b2b6-6bbe0f089d76.html.
Or here:
https://www.thechiefnews.com/news/sex-offender-given-plea-deal-despite-history/article_22b562f0-a3c5-11e7-9df8-2b479df09ed8.html
During the court case, we learned that a relative of the perpetrator shared Levi's protected health information to help the defense to discredit his testimony-despite the fact that a confession had already been made. The relative was a service provider for Levi before we learned of the crime and the defense tried to use the private information to make Levi look like a monster. As you can imagine, this was pretty devastating given the assurances we all get that our protected health information will never be shared due to HIPAA law. The relative was fired but then they decided to prey on my blog and to share more private information about Levi with the defense. After all of their efforts, the judge determined that nothing they suggested was true and we arrived where we are today.
The crimes in the case are disgusting. There are multiple victims over a span of too many years. Nobody wins in a case like this and everyone loses. Everyone. I cannot imagine being a parent whose child has performed these horrific acts. Or a child who has experienced it. Or a lawyer who defends it. We are grateful for the young person who came forward when she realized that Levi was being groomed to be a pawn in the game. She told when he was too afraid to and her courage is the reason he was not victimized further.
I have said this before but I will say it again. Victims are victims. Period. We are grateful that this two-year ordeal is over and we are ready to move on. This experience will not defeat us or define us. Levi is thriving and he is more than ready to move on. Thank you, my friends, for supporting us and for reaching out as the case came to an end this week. I can't wait to catch you up on our Life After a Miracle. There is so much to tell!
Sunday, August 6, 2017
A Sad Day
Today is a sad day for me because this will my last blog entry. I have loved being able to share our family's unique experiences as we have traveled the road of recovery from miraculous brain surgery. Not many will have such an experience in their lifetimes and I have enjoyed sharing the trials and victories of Miss Angela Hope with my friends and family.
Unfortunately, my words have been used to hurt one of my children and that is completely unacceptable. I never imagined that someone would take something special and make it ugly but that is exactly what has happened. I was so naive.
I am happy to continue to share updates on a personal level-just ask. We will continue fighting on for our children and for others who need an advocate. Thank you, my dear friends, for your love and support.
Unfortunately, my words have been used to hurt one of my children and that is completely unacceptable. I never imagined that someone would take something special and make it ugly but that is exactly what has happened. I was so naive.
I am happy to continue to share updates on a personal level-just ask. We will continue fighting on for our children and for others who need an advocate. Thank you, my dear friends, for your love and support.
Thursday, July 27, 2017
Disney World 2017
Okay, so let's talk about Disney World. Yes, we did go to Disney during one of the hottest and busiest months of the year and we survived.We truly had the best time ever during our time there but I have to be honest and say that experiencing Disney with children who have special needs is HARD. All of the things that are hard for the rest of us-the heat, the lines, rude people. Did I mention the lines? All of that is even harder for them.
We rented a special needs stroller for Miss Angela and that was the best planning decision of the whole trip. She never could have done the trip on foot. We found a great company that delivered the stroller and picked it up on the day that we left.
Splash Mountain, Space Mountain, Thunder Mountain.....she loved them all. Such a crazy daredevil! It was so fun to have our kids together in one place, along with our grandson, Ezra. There is nothing better than to witness your kids' love and devotion to each other and this was us. I am bragging but we really have a great bunch of kids.
I was a little bit sad when we returned home and some of the kids went back to their homes. Even now, I miss them. So much fun! I will leave you few more pictures:
We rented a special needs stroller for Miss Angela and that was the best planning decision of the whole trip. She never could have done the trip on foot. We found a great company that delivered the stroller and picked it up on the day that we left.
On the first day, we were given a Disability Access Pass for Angela. We were impressed at how easy it was to use the pass on the rides that she rode. They never split our group of eight and we were able to all ride together. The stroller was identified as a wheelchair and the staff had it ready at the end of the ride each time. Our girl was truly treated as a princess and the Disney cast called her Princess throughout the trip. I am sure it was in their training, but it really made her feel special. And then, one of them handed her this note:
I was a little bit sad when we returned home and some of the kids went back to their homes. Even now, I miss them. So much fun! I will leave you few more pictures:
Saturday, July 15, 2017
HEMICON 2017
I don't want to let too much time pass before I share about our trip to Orlando for the 2017 Pediatric Epilepsy Surgery Conference and Family Reunion. Not that I could forget a single moment of it. You see, this is the one time each year that we are together with people who understand EXACTLY what Life After a Miracle truly is. They are living it too.
Angela could not wait to get to Orlando to see her special friend, Levon. This is what their reunion looked like:
The kids loved watching other families take photos in front of their poster. We felt honored that Angela's picture was on the poster this year. The conference sessions were "top notch"-to borrow one of Angela's favorite phrases- and I gained a lot of new knowledge. I can't fit it all in here but one of the things I did not know is that children lose some function on their "good" side after hemispherectomy surgery. I had no idea! That fact came from my friend Monika, who is brilliant and who led the Brain 101 session. I also learned volumes about IEPs and writing ambitious goals. Oh dear, give this girl a little more knowledge and she might become dangerous!
The conference ended with a wonderful Pirate Party, complete with disco dancing. Yep. This 80's girl was in her element. We had so much fun!!
It was hard for Angela to say "See You Soon" to her friend Levon, and new friend, Lola whom we had the pleasure of meeting this year. The three were pretty inseparable the entire time and they had loads of fun.
Angela could not wait to get to Orlando to see her special friend, Levon. This is what their reunion looked like:
It was so good to see the two of them together. Levon underwent a Right Hemispherectomy and Angie's surgery was a Left Hemispherectomy so we joke that they are a matched set. They have a unique friendship and it warms my heart to know she has friends who truly get her. We were all pretty excited to get to the conference and see this too:
The conference ended with a wonderful Pirate Party, complete with disco dancing. Yep. This 80's girl was in her element. We had so much fun!!
It was hard for Angela to say "See You Soon" to her friend Levon, and new friend, Lola whom we had the pleasure of meeting this year. The three were pretty inseparable the entire time and they had loads of fun.
Throughout the conference, Toby and I repeatedly told each other how grateful we are for the work of the Brain Recovery Project. I cannot say it enough. The BRP provides advocacy, resources, and research to families whose children have experienced brain surgery for the treatment of epilepsy. They work tirelessly while caring for their own children and attending the endless appointments that are the result of our children's circumstances. We would be floundering without this work.
We ended our time in Orlando with a trip to Disney World but that will have to be saved for another day soon.
Friday, June 30, 2017
Our Boy
I am always grateful when I am out and someone asks me how Levi is doing. I know that it can be hard to know what to say to someone whose child does not live in their home. I have been there too. You don't want to say the wrong thing, appear awkward, or embarrass anyone. Please know, though, that although the decision was one of the most difficult that Toby and I have made in our years together, we are not embarrassed or ashamed. We made the best decision for Levi and for our family so that everyone's needs can be met. I think of it in terms of medical treatment that a child might need -we would never withhold medicine from them so why avoid providing developmental, daily living, and educational support when it is needed?
Levi lives in a group home setting in a great neighborhood. He is just over an hour away from home and he is home with us every other weekend. We are excited to have him come to Florida with us next week and it will be fun to spend more time with him. He goes to a public school and he is taking drum lessons and attending a church youth group. He regularly goes to the pool and the skate park. He is more like his peers than he is not and he is THRIVING.
We have noticed a new maturity when Levi is home with us and we have seen huge growth in him. He has learned strategies to manage his behavior and to avoid becoming overwhelmed. He is thoughtful and respectful to his siblings and to Toby and I. His teachers and the staff at his home have taken a special interest in helping him to be successful and it shows.
Earlier this year, we met with Levi's teachers to decide whether he should be on track to receive a traditional or a modified diploma. They felt strongly that Levi can achieve a regular diploma and we agreed with the knowledge that we can make a change later if needed. Months later, we are planning for him to transition to a large public high school closer to his home because he no longer needs the extra support of his current program. Last week, we received Levi's report card and he received a 4.0!!! All traditional classes and coursework. There are no words to describe my pride in his hard work and determination.
So, when you ask, this is how Levi is doing. He is working hard to overcome the challenges that are the result of his birth mother's poor choices. He is a smart, kind, respectful young man and I believe he has great potential to make a difference in the world. I am so glad that you asked:)
Levi lives in a group home setting in a great neighborhood. He is just over an hour away from home and he is home with us every other weekend. We are excited to have him come to Florida with us next week and it will be fun to spend more time with him. He goes to a public school and he is taking drum lessons and attending a church youth group. He regularly goes to the pool and the skate park. He is more like his peers than he is not and he is THRIVING.
We have noticed a new maturity when Levi is home with us and we have seen huge growth in him. He has learned strategies to manage his behavior and to avoid becoming overwhelmed. He is thoughtful and respectful to his siblings and to Toby and I. His teachers and the staff at his home have taken a special interest in helping him to be successful and it shows.
Earlier this year, we met with Levi's teachers to decide whether he should be on track to receive a traditional or a modified diploma. They felt strongly that Levi can achieve a regular diploma and we agreed with the knowledge that we can make a change later if needed. Months later, we are planning for him to transition to a large public high school closer to his home because he no longer needs the extra support of his current program. Last week, we received Levi's report card and he received a 4.0!!! All traditional classes and coursework. There are no words to describe my pride in his hard work and determination.
So, when you ask, this is how Levi is doing. He is working hard to overcome the challenges that are the result of his birth mother's poor choices. He is a smart, kind, respectful young man and I believe he has great potential to make a difference in the world. I am so glad that you asked:)
Thursday, June 15, 2017
My Heart
We went to Astoria today to take my dad his Father's Day gift of three Koi for his backyard pond. We had a great visit and then we (Toby, Angela and I) stopped at Fort George Brewery for dinner. If you have not been there, you should go. The atmosphere is relaxed and inviting and the menu is great.
The owners of the restaurant set up a play space with toys and games in a corner near our table. At first Angie did not want to play but then three boys close to her age entered the play area. She decided to join them and Toby and I watched while we waited for our dinner. Those boys are lucky I did not kidnap them. They came close to Miss Angela right away, asked her name, and started helping her with the games that were out. They smiled, laughed, high-fived, smiled, fist-bumped, and played. At one point, one of the boys came to me and said, "Your daughter is SO cute." Those boys acted like she was the best thing since cell phones. Angela asked us to get her a box because she did not want to stop playing to eat. We spoke to the boys parents before we left and they were just as enamored with Angela as we were with their sons.
Let me be very clear........we have moved past the idea of being grateful when children play with Angela. Why should we be? She is funny, kind, sweet, engaging, social, and so much more. This is a challenge, I think, for many parents of children with special needs. Here is what we have decided-kids with special needs are more like other children than they are different. They have so much to offer other kids, and these boys knew it. I think the idea of typically developing children avoiding children with special is needs is born in the minds of adults. Kids do not care. There are exceptions of course but we rarely experience kids being unkind to our girl.
Today was a good day. I loved watching Angela play with her new friends and to see their delight in her. We have had some tough days lately and I am grateful for the reminder of our girl's ability to impact others with her amazing spirit. And, as a bonus, I ran into my beautiful cousin Meghan on my way out. It was a very good day.
The owners of the restaurant set up a play space with toys and games in a corner near our table. At first Angie did not want to play but then three boys close to her age entered the play area. She decided to join them and Toby and I watched while we waited for our dinner. Those boys are lucky I did not kidnap them. They came close to Miss Angela right away, asked her name, and started helping her with the games that were out. They smiled, laughed, high-fived, smiled, fist-bumped, and played. At one point, one of the boys came to me and said, "Your daughter is SO cute." Those boys acted like she was the best thing since cell phones. Angela asked us to get her a box because she did not want to stop playing to eat. We spoke to the boys parents before we left and they were just as enamored with Angela as we were with their sons.
Let me be very clear........we have moved past the idea of being grateful when children play with Angela. Why should we be? She is funny, kind, sweet, engaging, social, and so much more. This is a challenge, I think, for many parents of children with special needs. Here is what we have decided-kids with special needs are more like other children than they are different. They have so much to offer other kids, and these boys knew it. I think the idea of typically developing children avoiding children with special is needs is born in the minds of adults. Kids do not care. There are exceptions of course but we rarely experience kids being unkind to our girl.
Today was a good day. I loved watching Angela play with her new friends and to see their delight in her. We have had some tough days lately and I am grateful for the reminder of our girl's ability to impact others with her amazing spirit. And, as a bonus, I ran into my beautiful cousin Meghan on my way out. It was a very good day.
Wednesday, May 31, 2017
Miss Angela is definitely keeping us on our toes. As the school year comes to an end she is struggling, I think, with the transition. Her behaviors have increased and I have to admit that I am tired. I am not a young mom, as she reminds me regularly:)
Angela has had an uneventful recovery from her surgery. She tells us often, "I am so glad that I got my stitches!" She is healing well and it is such a relief for her to no longer be in pain.
We had a meeting to discuss eligibility for Extended School Year services for Angela. Although she is technically eligible, we have declined the services for her. I know this sounds strange but let me explain. We have decided that Angela would benefit from other experiences that we have planned for her over the summer. She will be having weekly Occupational Therapy with her long-time therapist, Laura, at the hospital in Portland. In July, we will travel to Orlando for the International Hemispherectomy Conference. Angela will have a comprehensive reading evaluation there that we will share with the school to guide her services next year, not to mention her first trip to Disney World!! Angela can't wait to start swimming lessons with some of her favorite local teachers and she will have endless opportunities to hone her social skills. Everywhere she goes, she will be learning. We appreciate everything that our local school does to accommodate Angela's needs and she will have some activities to ease her transition back to school at the end of the summer. We are very fortunate to have such a caring, knowledgeable team who truly loves her and has her best interest in mind. I can't wait to see her growth over the summer!
Last weekend, Angela celebrated the sixth anniversary of her hemispherectomy surgery, on the day of Toby's 50th birthday. I am not exaggerating when I say that the surgery saved her life. Her doctors literally told us that they would not be able to stop her next major seizure. There really are no words to convey how very grateful we are for her life on a daily basis. She is such gift. Thank you for reading our story. We so appreciate the positive comments and support as we continue on the journey with our amazing girl.
Angela has had an uneventful recovery from her surgery. She tells us often, "I am so glad that I got my stitches!" She is healing well and it is such a relief for her to no longer be in pain.
We had a meeting to discuss eligibility for Extended School Year services for Angela. Although she is technically eligible, we have declined the services for her. I know this sounds strange but let me explain. We have decided that Angela would benefit from other experiences that we have planned for her over the summer. She will be having weekly Occupational Therapy with her long-time therapist, Laura, at the hospital in Portland. In July, we will travel to Orlando for the International Hemispherectomy Conference. Angela will have a comprehensive reading evaluation there that we will share with the school to guide her services next year, not to mention her first trip to Disney World!! Angela can't wait to start swimming lessons with some of her favorite local teachers and she will have endless opportunities to hone her social skills. Everywhere she goes, she will be learning. We appreciate everything that our local school does to accommodate Angela's needs and she will have some activities to ease her transition back to school at the end of the summer. We are very fortunate to have such a caring, knowledgeable team who truly loves her and has her best interest in mind. I can't wait to see her growth over the summer!
Last weekend, Angela celebrated the sixth anniversary of her hemispherectomy surgery, on the day of Toby's 50th birthday. I am not exaggerating when I say that the surgery saved her life. Her doctors literally told us that they would not be able to stop her next major seizure. There really are no words to convey how very grateful we are for her life on a daily basis. She is such gift. Thank you for reading our story. We so appreciate the positive comments and support as we continue on the journey with our amazing girl.
Monday, May 22, 2017
Angela had her 15th laser treatment for her port-wine birthmark today. The treatment has sparked a lot of different thoughts for me:
1) The Oregon Health Plan does not provide adequate care for children with special needs. Angela has an open card, rather than one of OHP's managed care programs. The open card presumably provides the most options for care and providers. For the past 15 months, OHP has denied Angela's doctor's repeated submissions for authorization for the laser treatments. Despite her diagnosis of a progressive disorder and multiple pictures and letters sent by the doctor OHP decided that she no longer needs treatment. Her treatment today was made possible by her addition to our private insurance after her adoption. The doctor noted that she has had some regression in the condition of her skin due to the delays and I do blame OHP for that.
2) Parents who have children with special needs are overwhelmed and working overtime. Today, as I sat in the waiting room of the surgery department, I listened to parents on the phone making deals with insurance companies, employers, respite providers and schools. I watched them reassure and comfort their other children and try to appear at ease as they awaited news from their child's doctor. They looked calm, but I knew better.
3) Children with medical and developmental challenges experience a different, unparalleled reality from the rest of us. They submit to never-ending tests and procedures and the routine of that becomes comfortable and predictable. I am so touched by Angela (and others) as she calmly describes the procedure of the day as we drive to the hospital. She is not scared and she is not shaken. This is her reality. But just because it has become her "normal" does not make it easy. It is a hard life and her courage and strength should not be minimized. Her experience has made her a bigger, better individual and she is a member of a small, exclusive group of heroic souls.
I continue to learn and grow each day that I am in Angela's presence. Today was no different. I am in awe of this brave, strong individual. She is beautiful inside and out. Here are a couple of Before and After pictures:
She will recover for a couple of weeks and then will repeat the process in early August. And two months later......and so on. You get it.
1) The Oregon Health Plan does not provide adequate care for children with special needs. Angela has an open card, rather than one of OHP's managed care programs. The open card presumably provides the most options for care and providers. For the past 15 months, OHP has denied Angela's doctor's repeated submissions for authorization for the laser treatments. Despite her diagnosis of a progressive disorder and multiple pictures and letters sent by the doctor OHP decided that she no longer needs treatment. Her treatment today was made possible by her addition to our private insurance after her adoption. The doctor noted that she has had some regression in the condition of her skin due to the delays and I do blame OHP for that.
2) Parents who have children with special needs are overwhelmed and working overtime. Today, as I sat in the waiting room of the surgery department, I listened to parents on the phone making deals with insurance companies, employers, respite providers and schools. I watched them reassure and comfort their other children and try to appear at ease as they awaited news from their child's doctor. They looked calm, but I knew better.
3) Children with medical and developmental challenges experience a different, unparalleled reality from the rest of us. They submit to never-ending tests and procedures and the routine of that becomes comfortable and predictable. I am so touched by Angela (and others) as she calmly describes the procedure of the day as we drive to the hospital. She is not scared and she is not shaken. This is her reality. But just because it has become her "normal" does not make it easy. It is a hard life and her courage and strength should not be minimized. Her experience has made her a bigger, better individual and she is a member of a small, exclusive group of heroic souls.
I continue to learn and grow each day that I am in Angela's presence. Today was no different. I am in awe of this brave, strong individual. She is beautiful inside and out. Here are a couple of Before and After pictures:
She will recover for a couple of weeks and then will repeat the process in early August. And two months later......and so on. You get it.
Friday, May 12, 2017
Rocking Recovery
If there is one thing Angela Hope does well (and there are actually lots of them) it is recovery. I mean she is really rocking it! Angela had surgery to repair her open, leaking g-tube site on Wednesday after 34 days of severe pain. From the minute she arrived at the hospital, the staff was on notice that she was IN CHARGE. We were so proud to see how she advocated for herself to get what she needed. Toby and I really just sat back and watched her. She was amazing.
The surgery was a little more complicated than we expected. After eight years of having a g-tube in her tummy, a portion of Angela's stomach had moved into the opening, creating what is called a fistula. The surgery was successful, though, and finally our girl is no longer in pain.
Angela is resting at home now and she is doing unbelievably well. She has had almost no pain at all and she is anxious to get back to school and her friends next week.
The surgery was a little more complicated than we expected. After eight years of having a g-tube in her tummy, a portion of Angela's stomach had moved into the opening, creating what is called a fistula. The surgery was successful, though, and finally our girl is no longer in pain.
Angela is resting at home now and she is doing unbelievably well. She has had almost no pain at all and she is anxious to get back to school and her friends next week.
We are thankful to put this chapter behind us and we are grateful for the wonderful care that Angela has every time she has a procedure. Since it was recently Nurses Day, I just want to repeat what I have said before......nurses are my heroes!! They are on the front lines every single day doing the hard, emotional, exhausting work and they are not noticed or honored often enough. Thank you, nurses!!
Tuesday, April 25, 2017
So much pain
It has been nineteen days since Angela's feeding tube was removed and she has been in serious pain on every single one of those days. It is too much. If I had known this would happen, I truly think I would not have asked for it to be removed. It would have been better for her to have a feeding tube she may not need than to have this pain.
We are stuck now in what feels like an impossible situation. The site where her tube was placed is not healing and the acid from her stomach is breaking down her skin and causing excruciating pain. The doctor may eventually close the wound surgically (which has been our preference all along!) but now the risk of infection is too high. She cannot have surgery until the site is healed and the site won't heal because she needs surgery. See the problem?
Through it all, Angela has been so brave and stoic. When she cries in pain, we know how severe the pain must be because this girl never cries. She insists on going to school, even though we sometimes have to pick her back up again and bring her home early. I know for a fact that I would not be able to hold it together like this if it were me. It is so hard to have her scream and cry in pain and be helpless to take it away.
Today we went back to the hospital to meet with her surgeon and with a wound/ostomy specialist. We were given a new treatment plan and we pray it will bring her some relief. We will keep plugging along and the thing that will propel us is this brave, strong, and amazingly, still smiling girl......
We are stuck now in what feels like an impossible situation. The site where her tube was placed is not healing and the acid from her stomach is breaking down her skin and causing excruciating pain. The doctor may eventually close the wound surgically (which has been our preference all along!) but now the risk of infection is too high. She cannot have surgery until the site is healed and the site won't heal because she needs surgery. See the problem?
Through it all, Angela has been so brave and stoic. When she cries in pain, we know how severe the pain must be because this girl never cries. She insists on going to school, even though we sometimes have to pick her back up again and bring her home early. I know for a fact that I would not be able to hold it together like this if it were me. It is so hard to have her scream and cry in pain and be helpless to take it away.
Today we went back to the hospital to meet with her surgeon and with a wound/ostomy specialist. We were given a new treatment plan and we pray it will bring her some relief. We will keep plugging along and the thing that will propel us is this brave, strong, and amazingly, still smiling girl......
Saturday, April 8, 2017
Setting the Bar
Angela Hope has been one busy girl lately. This week, she saw her rehab doctor, "Dr. Steve". We talked before the visit and agreed that we would ask to have her feeding tube removed. This is something Toby and I have wanted for months but we wanted to avoid the hassle of getting permission from the state so we were waiting until Angela's adoption was finalized. Angela, however, was more apprehensive. She has had a g-tube since she was 13 months old and she considers it to be a part of her. Ultimately, she agreed and Dr. Steve removed her feeding tube on Thursday. The procedure was emotional for me because her feeding tube served as a safety net when she was sick but not having it provided one more way for Angela to be more similar to her peers than she is different and that is most important.
I have been thinking about this concept a lot and you know what I realized? Angela IS more like her peers than she is different. She loves to dress up, play outside, FaceTime with loved ones, and have sleepovers. She hates math, having her hair combed, and broccoli. Pretty typical, right?
The day after Angela's g-tube was removed she was invited to join a school friend for Lunch With the Mayor. She was having some complications from her procedure but she was determined not to miss the event. She rallied and had a wonderful time at her lunch date. After a long nap at home she finished the day with a birthday party for another friend. If I had been her shoes, there is no doubt I would be on the couch for the day and would probably be there still.
Today was another big day. This morning, despite the pounding rain, Angela Hope threw the first pitch for the Opening Day of the 2017 Clatskanie Little League season. She was so excited to be asked and we were touched beyond belief. Once again we are reminded of the love and acceptance for Angela in this small community where we live. We wouldn't trade that for anything. To live in a community that is inclusive and that opens its arms to children with disabilities is rare and we are thankful to call Clatskanie our home.
After the opening ceremonies we were able to attend the second birthday party of Angela's biological sister, whom she affectionately calls "Peach". "Peach" is being adopted by a good friend and we are dedicated to raising the girls together and fostering their relationship. Angela has a unique ability to understand the relationship and she adores her little sister. It makes my heart happy to see them together:
And then, my favorite time of the day:
This is when I invariably lay my head on her cheek and breathe her in. I honestly stay in this position for as long as she will let me and I think of how grateful I am to be joining her on her journey. The privilege is not lost on me and I do not take it lightly. Angela Hope Harris has set the bar high for me, and for all of us, in regard to how we live our lives. According to her example, we should not take a single day for granted nor miss an opportunity to experience joy or be kind to others. We should live life fully and enthusiastically. No excuses allowed.....
Friday, March 24, 2017
A Good Day
I don't know if you know this about me, but I am a huge fan of Chip and Joanna Gaines and their show on HGTV called Fixer Upper. I love watching them transform old, dated homes into beautiful new spaces. There are lots of metaphors for life within the show. One of Joanna's favorite sayings is, "Today is a Good Day for a Good Day" and that's how I feel about today.
This morning, Josh was voted onto the Junior Prom Court. I had to keep it a secret for two whole days and it was not easy. Isn't he cute?
After my meeting, I stopped at the Vancouver Target to pick up a few things for our trip to the Pizza Show in Vegas next week. Yes, there is a convention for EVERYTHING, even pizza. Now, you know it is true. And in Vegas, no less. As I entered the checkout line, a woman tapped on my shoulder from behind. "I know you," she said. I wracked my brain but came up empty. Nothing. "Do you have a foster daughter?" she asked. Then, "Or....did you?". I said, " I used to be a foster parent." I truly had no idea where she was going......She smiled and said, "You were with Angie". Oh, YES!!!!!! I told her about Angie's recent adoption and that she was no longer in foster care.
We started talking and she said that she worked at Randall Children's Hospital in the PICU and she remembered us. "How COULD you?" I asked. It has been years since Angie has been in the PICU (Thank God) and thousands of children have come through since. And yet, she remembered Angie by name and somehow remembered me too. She had two very busy young children shopping with her so I did not question her about how or why Angie stayed in her memory but I would really love to know.
I know enough though. I was reminded today that Angie's journey with Sturge-Weber Syndrome and Hemispherectomy surgery has not been for nothing. God does not waste any opportunity to show His power and grace and I believe that He is using Angie to touch lives that we don't even know about. I have shared other similar encounters before and I don't think today will be the last. I am grateful for the reminders that Angie's pain and hard seasons are being used for good. She is a conduit for hope and joy and we have no idea how many lives she has touched. We will never know. I will never get tired of hearing stories of her impact on others and I do not think today's encounter was a coincidence. It was a Good Day for a Good Day.
This morning, Josh was voted onto the Junior Prom Court. I had to keep it a secret for two whole days and it was not easy. Isn't he cute?
Sadly, I could not attend the assembly because of a mandatory state meeting in Vancouver. I have been really heartbroken about having to miss out, but nothing will keep me away from the actual coronation on Prom Night. I promise not to be too embarrassing.
After my meeting, I stopped at the Vancouver Target to pick up a few things for our trip to the Pizza Show in Vegas next week. Yes, there is a convention for EVERYTHING, even pizza. Now, you know it is true. And in Vegas, no less. As I entered the checkout line, a woman tapped on my shoulder from behind. "I know you," she said. I wracked my brain but came up empty. Nothing. "Do you have a foster daughter?" she asked. Then, "Or....did you?". I said, " I used to be a foster parent." I truly had no idea where she was going......She smiled and said, "You were with Angie". Oh, YES!!!!!! I told her about Angie's recent adoption and that she was no longer in foster care.
We started talking and she said that she worked at Randall Children's Hospital in the PICU and she remembered us. "How COULD you?" I asked. It has been years since Angie has been in the PICU (Thank God) and thousands of children have come through since. And yet, she remembered Angie by name and somehow remembered me too. She had two very busy young children shopping with her so I did not question her about how or why Angie stayed in her memory but I would really love to know.
I know enough though. I was reminded today that Angie's journey with Sturge-Weber Syndrome and Hemispherectomy surgery has not been for nothing. God does not waste any opportunity to show His power and grace and I believe that He is using Angie to touch lives that we don't even know about. I have shared other similar encounters before and I don't think today will be the last. I am grateful for the reminders that Angie's pain and hard seasons are being used for good. She is a conduit for hope and joy and we have no idea how many lives she has touched. We will never know. I will never get tired of hearing stories of her impact on others and I do not think today's encounter was a coincidence. It was a Good Day for a Good Day.
Thursday, March 9, 2017
Life After Adoption
Miss Angela Hope Harris has now been adopted for 40 days. Most things about our lives have remained the same as before but a few have changed. One important benefit of Angie's adoption is that we are able to add her to our private health insurance and hopefully increase her access to vital medical services. In foster care, Angie's state insurance stopped authorizing laser treatments for her port-wine birthmark over a year ago, which are very clearly medically indicated and not cosmetic, unless you ask the Oregon Health Plan. We could not wait for her to be eligible for private insurance.
One small detail......we are losing our access to our current insurance and must change providers this month. Not such a big deal, except that Angie's adoption paperwork was submitted with the WRONG NAME on it and we have to wait for new documents. Add to that the stress caused by the requirement that she be added within 60 days of her adoption and you can imagine our distress. Why is it so complicated??? I truly cannot stand health insurance companies. And don't even get me started on the uncertainty about healthcare created by the current national leadership.
Despite these concerns, we are experiencing unimaginable joy to know that Angela Hope is our daughter, now and forever. Despite the hard mornings, and sometimes evenings too, the physical exhaustion of caring for a child with extensive needs, and the unknowns about her future, we could not be happier. This child captured our hearts from Day One. She is such a special gift.
I suspect that we will continue to experience this mix of frustration and joy throughout Angie's life. Most parents do, right? We have had some pretty unique circumstances, but all parents have their own challenges and experience similar emotions. Parenting is hard, no matter how you slice it, and we are just grateful for the privilege of guiding this special girl along the way. Thank you for hanging in there with us during the easy and the hard days......it is what keeps us going day after day.
One small detail......we are losing our access to our current insurance and must change providers this month. Not such a big deal, except that Angie's adoption paperwork was submitted with the WRONG NAME on it and we have to wait for new documents. Add to that the stress caused by the requirement that she be added within 60 days of her adoption and you can imagine our distress. Why is it so complicated??? I truly cannot stand health insurance companies. And don't even get me started on the uncertainty about healthcare created by the current national leadership.
Despite these concerns, we are experiencing unimaginable joy to know that Angela Hope is our daughter, now and forever. Despite the hard mornings, and sometimes evenings too, the physical exhaustion of caring for a child with extensive needs, and the unknowns about her future, we could not be happier. This child captured our hearts from Day One. She is such a special gift.
I suspect that we will continue to experience this mix of frustration and joy throughout Angie's life. Most parents do, right? We have had some pretty unique circumstances, but all parents have their own challenges and experience similar emotions. Parenting is hard, no matter how you slice it, and we are just grateful for the privilege of guiding this special girl along the way. Thank you for hanging in there with us during the easy and the hard days......it is what keeps us going day after day.
Tuesday, February 21, 2017
Angela Hope Harris
I have delayed writing about Angie's adoption ceremony. I am not sure why. The day was perfect. Exactly what we imagined. Magical. And now, Angela Hope Harris has realized her dream and we have achieved our heart's desire.
Toby and I now are solely responsible to care for this beautiful girl for whom the future is still uncertain. Her journey through Sturge-Weber Syndrome and its complications will never be complete. Despite her lifesaving surgery and its success, she is permanently disabled and the challenges will change and develop as she does. We are not young parents and it can be terrifying if I let myself spend too much time thinking about it.
After major brain surgery, few children escape the behavioral challenges that result from disrupting the structures of the brain. It is almost inevitable. My reality right now is that Miss Angela Hope expresses her hate for me almost every morning as we plod through our morning routine. Sometimes she throws in some name-calling that could make a sailor blush. She does not hate me permanently, in fact she usually loves me again before the bus comes to take her to school. Before that, though, I can easily become defeated. Trying to get her dressed, medicated, and prepared for her day can feel like too much to manage some days. Sometimes the behavior is repeated at bedtime. It is overwhelming and it is HARD.
Sometimes I wonder what I think I am doing, pretending to know how to parent such a complicated child with complex needs. What makes me qualified? Am I qualified? I still don't know. But do any of us? I think it just comes down to putting one foot in front of the other and taking on the obstacles as they come. We are all the same in that regard. Kids surprise us on a daily basis and we do our best to pretend we are prepared all along. Parenting 2.0.
I am thankful for this life. God chose me to be a mother to Angela Hope Harris and I am grateful for the honor. Toby and I are fully committed to her. We will walk into the future with her knowing that there will be hard days but they will not overshadow the blessings. She was and is, most definitely, worth the wait.
Never again do we have to ask permission to take a family vacation, schedule a haircut, plan educational or medical services, or hire a caregiver. It feels like freedom. Do you know what else it feels like? Terrifying, overwhelming, and hard. I am not going to sugarcoat it because I committed myself to honesty and transparency when I started this blog. Parenting this beautiful child is HARD.
Toby and I now are solely responsible to care for this beautiful girl for whom the future is still uncertain. Her journey through Sturge-Weber Syndrome and its complications will never be complete. Despite her lifesaving surgery and its success, she is permanently disabled and the challenges will change and develop as she does. We are not young parents and it can be terrifying if I let myself spend too much time thinking about it.
After major brain surgery, few children escape the behavioral challenges that result from disrupting the structures of the brain. It is almost inevitable. My reality right now is that Miss Angela Hope expresses her hate for me almost every morning as we plod through our morning routine. Sometimes she throws in some name-calling that could make a sailor blush. She does not hate me permanently, in fact she usually loves me again before the bus comes to take her to school. Before that, though, I can easily become defeated. Trying to get her dressed, medicated, and prepared for her day can feel like too much to manage some days. Sometimes the behavior is repeated at bedtime. It is overwhelming and it is HARD.
Sometimes I wonder what I think I am doing, pretending to know how to parent such a complicated child with complex needs. What makes me qualified? Am I qualified? I still don't know. But do any of us? I think it just comes down to putting one foot in front of the other and taking on the obstacles as they come. We are all the same in that regard. Kids surprise us on a daily basis and we do our best to pretend we are prepared all along. Parenting 2.0.
I am thankful for this life. God chose me to be a mother to Angela Hope Harris and I am grateful for the honor. Toby and I are fully committed to her. We will walk into the future with her knowing that there will be hard days but they will not overshadow the blessings. She was and is, most definitely, worth the wait.
Saturday, January 14, 2017
What Does Adoption Mean?
Adoption has been at the forefront of my mind recently, for obvious reasons. It seems almost surreal to be so close to Angie's adoption becoming a reality after many long months of delays and detours. Eighteen months to be exact. To an outsider adoption can seem to be a simple legalization of a relationship in a formal ceremony but it is actually much more complicated than that.
I have been going through our family pictures as I work on a project for Angie's adoption. Family pictures call up a spectrum of emotions as the times and places of the past are revisited. Our pictures revive memories of our boys' adoptions and their entries into our lives as infants, Josh at five months old and Levi as a newborn. We have a ton of pictures and image after image tells the story. Our boys, and Angie after them, were immediately loved and accepted by our family and friends. They gained more than just parents when they entered our home, they gained a village.
The images I love most are those that bring to life the pure joy of our biological children upon meeting and getting to know their new siblings. With each addition there was new little person to love and they rose to the occasion without exception. Playing in the snow, hunting for Easter eggs, opening Christmas gifts, graduations, vacations in the sun and teaching them what it means to be a Harris. Our children have been permanently changed by the experience of adoption and I think they would say the adoptions have had a positive impact. I don't mean to gloss over the challenges. There have been difficulties and disappointments to be sure. Adoption is not for the faint of heart, but it is worth every challenge, struggle, and uncertainty.
Angie's adoption process has been far different than our first two adoptions. Who is to say when it truly began? When she entered our home and hearts as a newborn? When we became a permanent foster placement for her? When we asked to adopt her the first time? The second? Or third? Or when she stated she did not want to be in foster care anymore? Our commitment to her has been real and unwavering all along and only God knew how her future would play out.
The stark difference in Angie's adoption is that she understands exactly what it means to be adopted. Eighteen months ago, while driving in the car, Angie told me, "Mom, I don't want to be a foster kid anymore", and I knew that we had to prevail in our quest to adopt her. I would ask again. I did, and here we are. Angie has shared our frustration at what seems to be an endless process. She has advocated to change her name and she has shared her excitement to become Angela Hope Harris. Our girl, in true form, has taken charge of this matter and has let us know she will not be defeated by difficult circumstances.
This is what adoption means......finding the people you belong with and making them yours. Gaining a village of people who make you feel special. Having siblings to share the journey with and to cheer you on. And, knowing exactly who you are and what you want. The legal ceremony is just the ritual that marks the end of the process.
We are beyond excited for Angie's adoption and we hope you will join us on our special day.
I have been going through our family pictures as I work on a project for Angie's adoption. Family pictures call up a spectrum of emotions as the times and places of the past are revisited. Our pictures revive memories of our boys' adoptions and their entries into our lives as infants, Josh at five months old and Levi as a newborn. We have a ton of pictures and image after image tells the story. Our boys, and Angie after them, were immediately loved and accepted by our family and friends. They gained more than just parents when they entered our home, they gained a village.
The images I love most are those that bring to life the pure joy of our biological children upon meeting and getting to know their new siblings. With each addition there was new little person to love and they rose to the occasion without exception. Playing in the snow, hunting for Easter eggs, opening Christmas gifts, graduations, vacations in the sun and teaching them what it means to be a Harris. Our children have been permanently changed by the experience of adoption and I think they would say the adoptions have had a positive impact. I don't mean to gloss over the challenges. There have been difficulties and disappointments to be sure. Adoption is not for the faint of heart, but it is worth every challenge, struggle, and uncertainty.
Angie's adoption process has been far different than our first two adoptions. Who is to say when it truly began? When she entered our home and hearts as a newborn? When we became a permanent foster placement for her? When we asked to adopt her the first time? The second? Or third? Or when she stated she did not want to be in foster care anymore? Our commitment to her has been real and unwavering all along and only God knew how her future would play out.
The stark difference in Angie's adoption is that she understands exactly what it means to be adopted. Eighteen months ago, while driving in the car, Angie told me, "Mom, I don't want to be a foster kid anymore", and I knew that we had to prevail in our quest to adopt her. I would ask again. I did, and here we are. Angie has shared our frustration at what seems to be an endless process. She has advocated to change her name and she has shared her excitement to become Angela Hope Harris. Our girl, in true form, has taken charge of this matter and has let us know she will not be defeated by difficult circumstances.
This is what adoption means......finding the people you belong with and making them yours. Gaining a village of people who make you feel special. Having siblings to share the journey with and to cheer you on. And, knowing exactly who you are and what you want. The legal ceremony is just the ritual that marks the end of the process.
We are beyond excited for Angie's adoption and we hope you will join us on our special day.
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