I have been feeling compelled to share about the other side of parenting children with special needs, specifically neurological disorders. Behavior, with a capital B. I have hinted about it in the past, but my main focus has been trying to share the positive outcomes of "life after a miracle". After all, that part is a lot more fun. The reality is, almost ALL children with a neurological disorder experience some incidence of behavioral issues, and more often the problems are chronic. I will share our experience but keep in mind that each child and family is unique.
Since we have had children and foster children with multiple diagnoses and varying personalities, we have pretty much seen it all. Each one serves up his or her own special menu. Yelling, screaming, hitting, biting, spitting, throwing, refusals, door slamming, defiance, blaming, name-calling, impulsivity, eloping, avoidance, you name it. Sounds like a huge bucket of fun, right? The impact of the negative behavior is widespread and it touches family, friends, caregivers, teachers, coaches, and helpers. Its insult has caused our family to miss many community and school events, avoid public places, be late for school and work, and cut short dinners and parties when the evil monster shows its face. We pick kids up early from events and hold our breath when they go somewhere without us. Often, our kids just cannot do many of the activities enjoyed by peers. We have left stores with a full basket more times than I can count. After thirty years of parenting, Toby and I are well versed in Love and Logic, Magic 1-2-3, toughlove, reverse psychology, reward systems, and other parenting approaches and they almost never work in the midst of the meltdowns caused by a misfiring brain. It is exhausting, overwhelming, and disappointing. Yes, we sometimes feel sorry for ourselves, even throw a little pity party, but do you know who we really feel sorry for? THEM.
Kids inherently want to please. They do not want to misbehave, disappoint, and embarrass. When people see our kids misbehave and meltdown in public, they miss a crucial point in the interaction, which is the aftermath. With the exception of a few specific diagnoses, children are unfailingly so, so, sorry when they reflect on their behavior. Every. Single. Time. They are at least as disappointed as we are. It is heartbreaking, and we work to build them back up again, despite being completely worn from the battle.
When I see other parents struggling to manage behaviors in public, I want to give them a hug. I try to send a mental message, saying, "I Know". I hope they receive it. I hope that they feel my complete and total lack of judgment and my frustration that I am unable to help. I know that they go home feeling depleted, exhausted, and sad. And I am so very sorry and helpless.
I am not sure why I wanted to share about difficult behavior. Maybe, to spread awareness and understanding so you can support parents you know who may be dealing with difficult behaviors. Or, maybe I felt less than transparent in sharing so many joys and few of the negative aspects of our reality. Either way, I hope you will have an opportunity to share a smile or a hug with a parent you know who has been served up a menu of meltdowns and needs a little understanding. Sorry for the long post. Thank you if you you made it all of the way through:)
Sunday, October 28, 2018
Tuesday, October 2, 2018
Surgery #.......who knows?
I have no idea how many surgeries our girl has endured but I do know that the glaucoma procedure she had yesterday was her 14th glaucoma procedure in her ten years. Angela had an Ahmed valve implanted in her left eye and she came through like a champ, as always. There are some pretty scary potential complications with this procedure but so far the results are very promising.
For the past two days, Angela has traveled by wheelchair again. Her vision is limited right now, and she is a little unsteady on her feet. And then there is the cast on her right leg. I have been struck by the public response to a child in a wheelchair. And, to be honest, with a patch on her eye, a splint on her wrist, and a cast on her leg. Angela used a wheelchair for quite a while after her brain surgery but I had forgotten.
When people see us, they move to the side to let us pass. They allow us to enter the elevator before them and they hold doors to let us go through. They smile extra hard when you catch them looking. And then, there is the look in their eyes. Pity. Every. Single. Time. I am not the type to be confrontational in public (and besides that, they mean no harm to us) but if I were, this is what I would say:
"Please don't pity me. I know, you see a mom who has been delivered a load of burdens beyond her share, but that is not me. Instead, I have the privilege of being seated in a front-row seat to a miracle. I have watched a child, who was delivered a death sentence, defeat her fate and be saved by a drastic, unimaginable surgery. I have been witness to a child who knows no burden, despite her undue challenges. She is a vision of what life would be like if we knew we could not fail. We would try anything and everything! Although she rages at those who love her most, she is not defeated and she smiles through every procedure. She is polite, and grateful beyond measure, to those who care for her in clinics and hospitals. Stare if you must, but do not pity us, or her."
It is interesting, the perspective of a parent whose child has extraordinary needs. Contrary to popular belief, we do not want people to feel sorry for us. Oh, we want and need the disabled parking permit. Have you lifted a fifty-pound wheelchair? Multiple times in a day? At the end of the day, though, we want what you want. We want our kids to be happy and healthy and to live a full life. We do not want
pity, though, because we share a secret. Although we wish our children did not have to struggle, we also know that we have met some of the most caring, compassionate people on our journey and that our children are wise beyond their years. They know the value of their days, and they do not take a single day for granted.
For the past two days, Angela has traveled by wheelchair again. Her vision is limited right now, and she is a little unsteady on her feet. And then there is the cast on her right leg. I have been struck by the public response to a child in a wheelchair. And, to be honest, with a patch on her eye, a splint on her wrist, and a cast on her leg. Angela used a wheelchair for quite a while after her brain surgery but I had forgotten.
When people see us, they move to the side to let us pass. They allow us to enter the elevator before them and they hold doors to let us go through. They smile extra hard when you catch them looking. And then, there is the look in their eyes. Pity. Every. Single. Time. I am not the type to be confrontational in public (and besides that, they mean no harm to us) but if I were, this is what I would say:
"Please don't pity me. I know, you see a mom who has been delivered a load of burdens beyond her share, but that is not me. Instead, I have the privilege of being seated in a front-row seat to a miracle. I have watched a child, who was delivered a death sentence, defeat her fate and be saved by a drastic, unimaginable surgery. I have been witness to a child who knows no burden, despite her undue challenges. She is a vision of what life would be like if we knew we could not fail. We would try anything and everything! Although she rages at those who love her most, she is not defeated and she smiles through every procedure. She is polite, and grateful beyond measure, to those who care for her in clinics and hospitals. Stare if you must, but do not pity us, or her."
It is interesting, the perspective of a parent whose child has extraordinary needs. Contrary to popular belief, we do not want people to feel sorry for us. Oh, we want and need the disabled parking permit. Have you lifted a fifty-pound wheelchair? Multiple times in a day? At the end of the day, though, we want what you want. We want our kids to be happy and healthy and to live a full life. We do not want
Friday, September 21, 2018
In the Midst
My last post was about new information about treatments that our girl may need. Well, she needed them all and now we are in the middle of it. You know what? Life doesn't really feel very different. Why am I surprised? I am not sure if we have become immune to chaos, or if Angela just makes it all look so darn easy. Maybe it is a little of both.
Here is the latest:
Angela had 3 hours of oral surgery last Friday. By the time we made the drive home from the hospital, she was behaving as if nothing had ever happened. Really.
On Monday, Angela's right leg was casted-the first in a series of casts that will be applied and changed every week for 4-8 weeks. The projected outcome is that her ankle will resume its neutral position and she will have fewer falls and a more typical gait pattern. She will be fitted for a new brace, and then we will try an electrical stimulation unit to try to optimize the function of her foot and ankle.
Ten days from now, Angela will have an Ahmed valve implanted in her left eye to attempt to lower the pressure in her eye due to glaucoma. She has experienced a significant reduction in her vision in the past several months as we have tried to treat her glaucoma, and that will not be reversed by the surgery, but hopefully, her vision will stabilize and not continue to deteriorate. She will be out of school for at least two weeks after surgery and she is already mourning the loss of her social life:)
I am not exaggerating when I tell you that Angela truly takes all of the inconveniences in stride and views her life as a wonderful adventure. Who does that? Well, I guess, a little girl who had endured major brain surgery and, despite her cognitive limitations, understands that life is a fragile gift and is not to be taken for granted. She is so far ahead of the rest of us that she can't even see us in the rearview mirror.
How can we capture this gift for ourselves? I am not at all sure that we can, given that most of us have never experienced challenges even nearing the obstacles that have faced Miss Angela Hope. We can draw from her strength, though, and from her ready smile and casual outlook on her fate. Her positive attitude is contagious if you recognize its power, and you can have it too.
Here is the latest:
Angela had 3 hours of oral surgery last Friday. By the time we made the drive home from the hospital, she was behaving as if nothing had ever happened. Really.
On Monday, Angela's right leg was casted-the first in a series of casts that will be applied and changed every week for 4-8 weeks. The projected outcome is that her ankle will resume its neutral position and she will have fewer falls and a more typical gait pattern. She will be fitted for a new brace, and then we will try an electrical stimulation unit to try to optimize the function of her foot and ankle.
Ten days from now, Angela will have an Ahmed valve implanted in her left eye to attempt to lower the pressure in her eye due to glaucoma. She has experienced a significant reduction in her vision in the past several months as we have tried to treat her glaucoma, and that will not be reversed by the surgery, but hopefully, her vision will stabilize and not continue to deteriorate. She will be out of school for at least two weeks after surgery and she is already mourning the loss of her social life:)
I am not exaggerating when I tell you that Angela truly takes all of the inconveniences in stride and views her life as a wonderful adventure. Who does that? Well, I guess, a little girl who had endured major brain surgery and, despite her cognitive limitations, understands that life is a fragile gift and is not to be taken for granted. She is so far ahead of the rest of us that she can't even see us in the rearview mirror.
How can we capture this gift for ourselves? I am not at all sure that we can, given that most of us have never experienced challenges even nearing the obstacles that have faced Miss Angela Hope. We can draw from her strength, though, and from her ready smile and casual outlook on her fate. Her positive attitude is contagious if you recognize its power, and you can have it too.
Friday, July 20, 2018
Falling Apart
I should know better than to get complacent. For the past year or so, we have had only good news at Angela's appointments with her doctors. No seizures, no vision changes, good results from her laser treatments, interventions effectively managing her orthopedic issues, and impressive academic gains. Life has been good and we have been grateful.
This week, we had different news, and I am reminded that we are still dueling with Sturge-Weber Syndrome for the upper hand, and we always will. A visit to the glaucoma specialist revealed that the second eye drop we added to try to control the pressure in her left eye has failed. If you are unfamiliar with glaucoma, it is increased pressure in the eye caused by too much fluid, which can damage the optic nerve and lead to vision loss. It can be controlled but not cured. Angela's doctor added a third eye drop and we will check in with her in two weeks. If this treatment fails, we will be considering another surgery. The vision exam also revealed that Angela's vision is significantly decreased in her left eye so we will be seeing her vision specialist on Tuesday. She has been taking her glasses off a lot lately, so it all makes sense now.
Yesterday, we had an appointment with "Dr. Steve". Dr. Steve is a physiatrist and he has managed Angela's care since her time in inpatient rehab after surgery. We made the appointment because we were concerned about pain and tightness in Angela's wrist and shoulder. I figured it was probably time for another round of botox injections, which brings temporary relief. Dr. Steve agreed with me, and after examining our ever-patient, yet sassy girl, he said that she is developing a contracture in her ankle, which is "a condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints." Contractures are not something to mess around with. He will treat her ankle with botox injections, followed by serial casting, which is a series of casts which stretch the muscles over a period of weeks. After the casting, we will discuss long-term spasticity management for her to prevent contractures. More disappointing news.
It has been a rough week. As always, though, Angela has approached the news with her usual style of "Life is an Adventure!" so we will try to do the same. Because it really is, after all.
This week, we had different news, and I am reminded that we are still dueling with Sturge-Weber Syndrome for the upper hand, and we always will. A visit to the glaucoma specialist revealed that the second eye drop we added to try to control the pressure in her left eye has failed. If you are unfamiliar with glaucoma, it is increased pressure in the eye caused by too much fluid, which can damage the optic nerve and lead to vision loss. It can be controlled but not cured. Angela's doctor added a third eye drop and we will check in with her in two weeks. If this treatment fails, we will be considering another surgery. The vision exam also revealed that Angela's vision is significantly decreased in her left eye so we will be seeing her vision specialist on Tuesday. She has been taking her glasses off a lot lately, so it all makes sense now.
Yesterday, we had an appointment with "Dr. Steve". Dr. Steve is a physiatrist and he has managed Angela's care since her time in inpatient rehab after surgery. We made the appointment because we were concerned about pain and tightness in Angela's wrist and shoulder. I figured it was probably time for another round of botox injections, which brings temporary relief. Dr. Steve agreed with me, and after examining our ever-patient, yet sassy girl, he said that she is developing a contracture in her ankle, which is "a condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints." Contractures are not something to mess around with. He will treat her ankle with botox injections, followed by serial casting, which is a series of casts which stretch the muscles over a period of weeks. After the casting, we will discuss long-term spasticity management for her to prevent contractures. More disappointing news.
It has been a rough week. As always, though, Angela has approached the news with her usual style of "Life is an Adventure!" so we will try to do the same. Because it really is, after all.
Tuesday, July 10, 2018
Nurses
Have you ever really thought about nurses? Maybe not, if you and your relatives have been fairly healthy and have not experienced medical crises. And that's okay. But if you haven't, I want to tell you how crucial they are when you have a family member in need. It makes every single moment in that hospital room more bearable when you have a nurse who has your back. It makes it possible to look away from the constant monitoring of every breath and heartbeat. He or she can read your needs and talk you down from the wall that you did not even know you were climbing. They will feed you little bites of hope in your darkest moments and will act like it is all in a day's work. They go home, gratefully, to their healthy family, make dinner, tuck the kids in bed, and return the next day for another dose of caregiving.
One of the most inspiring nurses I encountered was a woman who had lost her sixteen-month-old son to a rare and fatal disorder. She was in charge of Angela's care in the middle of a serious blood infection that she contracted while in the hospital for another long illness. We were over three weeks in and we truly did not know if she would go home with us. During this time, our nurse was positive and encouraging as she administered drug after drug to try to beat the infection. "This will be the one", she said, time after time. She told us she thought Angela would get well, sat with me, and even held my hand. She spoke fondly about her son, but not about the loss. I will never forget it. I have so many more stories like this and so many memories of wonderful nurses. I will not forget.
Nurses are my heroes and I could not prouder that Kirsten is one of them. She has and will continue to change lives. She has the gift of compassion and the desire to make others' lives better. I want to leave you one more message about nurses by my favorite author, Kelly Corrigan. You can see it here:
https://www.youtube.com/watch?v=9caaa-DJ8HU
If you know a nurse, please thank them for their work. There is no greater giftl
Saturday, June 16, 2018
Graduation Day
Last week, our fourth child graduated from high school. Joshua Samuel Harris. You would think it would be easier to accept on the fourth time around, but that is just not true. I still want to rewind back to the days when my little boy was still little.
Joshua has been one of the kindest souls I know for his whole life. Always empathic and caring towards those who need a little extra love and care. In sixth grade he was awarded the Norma Simmons award for Outstanding Sixth Grade Boy and we knew that others noticed too.
Joshua has been one of the kindest souls I know for his whole life. Always empathic and caring towards those who need a little extra love and care. In sixth grade he was awarded the Norma Simmons award for Outstanding Sixth Grade Boy and we knew that others noticed too.
And then, overnight it seems, we were here:
The same two very kind individuals, Josh and Madeline, were graduating from high school. I had the very special honor of delivering their diplomas as a recently-appointed school board member:
I must have been afraid that I had not given Josh some imperative nugget of advice because I gave him the following letter on graduation day:
Joshua Samuel-
Here we are. Your graduation. It is hard to believe that it has been eighteen years since you were delivered to our home and our hearts, and our lives were changed forever. As we approach your graduation, there are some things I want to tell you:
1) Congratulations!
Ignore my sniveling and carrying on. In fact, forget everyone and make this about you for a moment. Accept every slap on the back and lean into all those sloppy kisses. Take your victory lap. This is one of the big moments. Drink it all in.
2) We’ve got your back.
You are never alone in this world. There’s a safety net knit tightly of good friends and family who are all ready to reach out when you need that helping hand. Let their great love embolden you in weak moments. And when you get a chance, do the same for someone else. There is almost nothing in the world that will cure what ails you like doing something nice for someone else.
3) Dare mightily.
Dream really, really big, but also live every day with a spirit of wonder and brave resolve too. A lot of adulthood is not so much an exciting new road but a familiar, well-worn path. Venture to marvel at the simple joys and brace for the sad, scary things that can pop up along the way. Dare to imagine a better you every day.
4) Show up.
We never wanted you to just be a guy. We were always hoping you would be a certain type of guy. So show up for people. Celebrate their successes and ease the burden of their failures. Make them laugh and sit with them when they are sad. Go to boring parties, lame weddings, and uncomfortable dinner parties because someone asked you to be there for them. Just show up. You’ll be amazed at the joy you’ll find from doing the thing you really didn’t want to do.
5) Stay true to yourself.
The young man you have become is exactly who you were supposed to become. Know what you want and go for it, despite what anyone else says, including me!
6) Be proud of your kindness.
As much as a mother raises her son, so does a son raise his mother. You have taught me many things as I have watched you grow. From you I have learned the power of a tender heart as I have witnessed your quiet kindness to others all of your life. Your teachers throughout grade school always remarked about your concern for the feelings of other children. You attract friends wherever you go, and you are loyal to them.
7) Know that change will come and it can be good.
You have taught me about courage. Our family life has been marked by transition, and you have endured many changes from a young age. In your 18 years you have had brothers and sisters come and go from our home. Change has been constant. Anyone who has grown up in a large family knows that it is never without trial. You have navigated these changes with elegance, courage, acceptance, and again humor, when all else failed. It has been remarkable to watch. You are stronger than you know.
8) You look so handsome.
Seriously. This one sticks in my throat every time. That picture of you in the paper with all the other graduating seniors? Almost did me in. You have no idea what it’s like to watch someone grow up before your eyes yet, but I hope you get that privilege. You were a beautiful, perfect boy the minute I met you and your bright, golden light has never dimmed. We are so unspeakably proud of the young man you have become inside and out. And you look great in that cap and gown too. Really, you are rocking it.
9) Some of our memories are mine to keep.
You will not know or remember how hard I fought for you to be my forever son. How I cried when I was afraid it might not happen. You did not see my determination that I would raise you and your brother together. The fight in court, the letters written, the love that grew in our hearts immediately. I will keep those memories for you, but hope you know how very special your inclusion in our family is to us. You have changed our lives.
10) I love you.
Truly, honestly, deeply. This day. Every day. Forever. Take that knowledge with you into beautiful corners and brave new worlds. Let it warm you on cold nights and lead you out of dark places.
The best is yet to come, sweet boy. Knock ’em dead.
Love, Mom
This is a happy/sad season for moms. It is so hard to let go, and yet so wonderful to see your kids grow up into amazing human beings. If it is your turn next, please know that as hard as it is, there are good times ahead, too. You can do this!
Friday, May 18, 2018
Looking Forward
A few months ago, I wrote this post about Levi returning home:
http://miracleshappen527.blogspot.com/2018/01/starting-over.html
Reading it tonight brings it all back. I was terrified that Levi would not be accepted at school and in the community. I wanted so badly for him to have a smooth transition and to find his place among his peers. I have waited but I think it is safe to say that is exactly what has happened. He is truly home.
http://miracleshappen527.blogspot.com/2018/01/starting-over.html
Reading it tonight brings it all back. I was terrified that Levi would not be accepted at school and in the community. I wanted so badly for him to have a smooth transition and to find his place among his peers. I have waited but I think it is safe to say that is exactly what has happened. He is truly home.
I have been feeling so grateful. I am grateful for the love and acceptance Levi has received from friends, family, and caring community members. I am grateful that barely a day goes by without someone asking me how he is doing. I am grateful for a family that is whole again and the peace and relief that comes with that knowledge.
Life is uncertain and that fact can be terrifying if you let it overcome you. We have been dealt unwelcome surprises and disappointments over the years, and there is no guarantee that we will not have more to come. I am working hard to appreciate the present and to look toward the future. We have worked hard for this. Our family has proven itself to be strong and we will weather whatever comes next as we have everything else-together. Thank you, my friends, for your unwavering support. You will never know how much it means.
Monday, April 2, 2018
Keeping It Real
Toby and I have been struggling lately to keep up with all of the appointments necessary for two kids with extra needs. Particularly Angela, who has had medical or dental appointments in Portland once or twice per week for the past month or longer. The trip to Portland ends up taking most of a day each time, and I am so grateful that Toby is self-employed and has a schedule that usually allows him to take Angela to her appointments. They both really enjoy their time together, and to be honest, I get a little jealous that it can't be me. It is basically a party on wheels-the two of them cackling and joking the entire time. They always come home with stories.
We are fortunate, Toby and I. We have been blessed with the resources to care for these children. They have added so much to our lives. We have learned more about children with special needs than we ever thought there was to know, and we have had amazing people supporting our endeavor to make their lives as full as possible, whom we may not have met otherwise. Our other children have reaped the benefits of developing empathy, patience, and compassion at a young age. We do not regret jumping in with both feet, having faith that it would all work out as we raised the children we fell in love with.
In keeping with my commitment to being honest on this blog, I want to share the other side of the story......it is HARD. Toby and I had our biological children at a young age, planning that we would retire early and have unlimited time together. Not. The reality we traded that for is that almost every day Angela expresses her disappointment that I am her mom, screams and slams her door on multiple occasions, and is unable to perform many functions of self-care without help. She "hates" me often, even though I know it is her frustration talking. She is a full-time job. We are no longer young parents and we are tired.
Do you know what always happens, though, when I become discouraged? God sends me a special sign that I did not misunderstand the calling and this is the life that was intended for me. He never disappoints and today I received such a sign. Today, I learned of a scholarship application in which a beautiful young lady in Josh's senior class cited Angela's influence as the driving force behind her desire to be a pediatric nurse. Wow. She has allowed me to share the following excerpt:
We are fortunate, Toby and I. We have been blessed with the resources to care for these children. They have added so much to our lives. We have learned more about children with special needs than we ever thought there was to know, and we have had amazing people supporting our endeavor to make their lives as full as possible, whom we may not have met otherwise. Our other children have reaped the benefits of developing empathy, patience, and compassion at a young age. We do not regret jumping in with both feet, having faith that it would all work out as we raised the children we fell in love with.
In keeping with my commitment to being honest on this blog, I want to share the other side of the story......it is HARD. Toby and I had our biological children at a young age, planning that we would retire early and have unlimited time together. Not. The reality we traded that for is that almost every day Angela expresses her disappointment that I am her mom, screams and slams her door on multiple occasions, and is unable to perform many functions of self-care without help. She "hates" me often, even though I know it is her frustration talking. She is a full-time job. We are no longer young parents and we are tired.
Do you know what always happens, though, when I become discouraged? God sends me a special sign that I did not misunderstand the calling and this is the life that was intended for me. He never disappoints and today I received such a sign. Today, I learned of a scholarship application in which a beautiful young lady in Josh's senior class cited Angela's influence as the driving force behind her desire to be a pediatric nurse. Wow. She has allowed me to share the following excerpt:
My passion for wanting to help kids comes from a little girl that lives in my community named Angela. Angela has had more hospital visits in her lifetime than anyone should ever have to endure and she is only eight years old. This little girl continues to amaze everyone in her life with her ability to stay strong and push through all of the medical challenges she faces. She currently only has half her brain because she had a disease in her brain that caused her to have many seizures that if they hadn’t done something drastic quickly, the disease would have ended up killing her. This little girl still continues to thrive every single day of her life and because of her strength and the amount of love she still has to offer people it has pushed me towards helping kids/ families in need like her and the amazing family she has.
She will be an outstanding nurse. The young woman never walks by Angela in the community without stopping to talk with her and to make her feel special. She is a gift to our world and she will probably never truly know how much her words mean to a mom who worries about the future and struggles to keep a smile on the hard days. It is all worth it, and today I was given a reminder.
Monday, March 12, 2018
Sixteen
Sixteen years. Sixteen years ago, a baby traveled to us from Seattle in a crazy snowstorm. He came to us wearing nothing but a diaper and a onesie and he was the smallest baby we had ever seen. We loved him instantly and completely. Some of you have heard and know our story, but it needs to be repeated today.........on the eve of his sixteenth birthday.
This crazy little boy came with a load of burdens that were not his to bear. But he had to overcome them anyway. The first weeks and months were some of the hardest days we have had but I honestly believe that we are better people for pushing through it. We have learned so much. So about that.........
I would not trade this parenting experience for anything. There have been days when I felt that all of my skills had been exhausted and were far from adequate. The calls from school, meltdowns, and obstacles. Many tears and much frustration. But most of all, overwhelming joy.
Levi is loving, caring, and thoughtful. Above all, he has always wanted to do the right thing, even when his actions have indicated otherwise. He adores his siblings and WORSHIPS his brother. He is funny, smart, engaging, and empathetic. His peers seek him out because he is fun, kind and hilarious.
The past few years have been hard. I am not going to lie. While we would never choose to have our family separated, we have had to make the excruciating choice to do so. We never wanted that, but it was the best possible decision for our family. Sometimes the hardest choice is also the best one. Another lesson.
Fast forward to today.......sixteen years after our frozen newborn baby joined the family. Levi has been back at home for over two months. For over two months, he has made good choices, practiced respect and humility, engaged with positive influences, and he has worked hard to prove his new and improved self. Our community has welcomed him back with kindness and we are grateful, as small towns tend to have long memories.
So here we are. This goofy guy will be sixteen years old tomorrow. He is a gift and a lesson. A blessing and a joy. He is a warrior and he has persevered through incredible adversity. Most of all, though, he is strong. I am so proud of his growth and his strength. His journey has not been easy but he has not given up. I have a feeling that sixteen will be the best year yet.
Saturday, January 27, 2018
Starting Over
Today, our family is starting over. After 18 months away, Levi is home and our family is complete. I write this post with caution, as I want to be very clear. As you read, please know this....we want our family to be home together, and we always have. This move was carefully considered and meticulously planned.
We are excited to have Levi back at home, where he belongs. We had the best day. After picking Levi up, we went shopping together, ate lunch together, and then came home to a quiet evening together. It felt "normal", which is a rare occurrence for us. The missing piece of the puzzle is in place.
I know that there are those who will question our decision to move Levi home again. He has struggled at home in the past and we have had some pretty humbling experiences together. To those, I would say that every child deserves and needs a family. That is what brought him into our home in the first place. The past 18 months were not wasted and Levi has excelled in his home and school environments. During those months, we were no less of a family, but elements of "regular" family activities were different. We still evaluated school progress and spent weekends and vacations together.
Levi has grown and changed and he is ready to begin again in Clatskanie. It is my hope that his peers and adults alike will give him that chance. His courage and resilience are unparalleled. My son is a warrior, who never asked for or deserved the insults to him that happened before he was born, and who is determined to be victorious over them.
Toby and I are scared. In fact, we are terrified. Not that Levi will fail, or that we will. No, we are apprehensive about our community's ability to show him the grace and compassion he deserves. Small towns are funny that way sometimes. It is easier to have a new start when you can assume some level of anonymity, but Levi will not have that benefit.
Bringing Levi home today is no less terrifying than the day he arrived in our home, weighing only 5 pounds, in the middle of a snowstorm. That little bundle came with a huge batch of needs, and we felt much the same as we do today. Excited for the future, anxious about our abilities, proud of Josh and his love for his sibling, and worried for our precious new son. Today is a new beginning and our family is, once again, complete.
We are excited to have Levi back at home, where he belongs. We had the best day. After picking Levi up, we went shopping together, ate lunch together, and then came home to a quiet evening together. It felt "normal", which is a rare occurrence for us. The missing piece of the puzzle is in place.
I know that there are those who will question our decision to move Levi home again. He has struggled at home in the past and we have had some pretty humbling experiences together. To those, I would say that every child deserves and needs a family. That is what brought him into our home in the first place. The past 18 months were not wasted and Levi has excelled in his home and school environments. During those months, we were no less of a family, but elements of "regular" family activities were different. We still evaluated school progress and spent weekends and vacations together.
Levi has grown and changed and he is ready to begin again in Clatskanie. It is my hope that his peers and adults alike will give him that chance. His courage and resilience are unparalleled. My son is a warrior, who never asked for or deserved the insults to him that happened before he was born, and who is determined to be victorious over them.
Toby and I are scared. In fact, we are terrified. Not that Levi will fail, or that we will. No, we are apprehensive about our community's ability to show him the grace and compassion he deserves. Small towns are funny that way sometimes. It is easier to have a new start when you can assume some level of anonymity, but Levi will not have that benefit.
Bringing Levi home today is no less terrifying than the day he arrived in our home, weighing only 5 pounds, in the middle of a snowstorm. That little bundle came with a huge batch of needs, and we felt much the same as we do today. Excited for the future, anxious about our abilities, proud of Josh and his love for his sibling, and worried for our precious new son. Today is a new beginning and our family is, once again, complete.
Saturday, January 20, 2018
The Dread
I have been preparing myself for Angela's IEP meeting later this week. Moms of children with special needs commiserate about the stress induced by IEP meetings, and we prop each other up with words of encouragement and bravery in the days before. Some parents I know compare the meetings to a third world war, or a root canal. It can be that intense. Unfortunately, many school districts do not prioritize the needs of the child in IEP planning, and district budgets and resources determine the outcome. I am proud to say that we have never experienced this, despite living in a small school district with limited resources.
No, I am not anxious about the prospect of having to wrestle the services Angela needs to learn from district officials, but there is something else haunting my thoughts-The Dread. The Dread stems from knowing that when Angela's present levels are shared, I will grieve what is missing. As much as I prepare myself, it is painful to hear that my girl is years behind her peers in almost every academic domain. She will never catch up. The very kind teachers and therapists will emphasize the gains she has made and the amazing new skills she is learning. They will praise her wonderful social skills and that she is "a friend to everyone". And I will be immobilized by the milestones she has not met.
This is not my first rodeo and I have attempted to console myself. I tell myself that I am fortunate that I do not have the misplaced guilt experienced by some biological parents, who believe they may have contributed to their child's disability with their genetics. I tell myself, "We chose this" and "We knew what we were taking on". I remind myself that we have educated ourselves about Sturge-Weber syndrome and recovery from hemispherectomy surgery, and we have provided Angela with numerous opportunities and supports to maximize her potential based on what we have learned. We are doing our job. None of this makes a bit of difference.
I am overwhelmingly proud and grateful for Angela's successes. She is an outstanding individual who has risen above adversity and is thriving and growing beyond our expectations. I am not embarrassed or ashamed by her delays, nor do I wish for a different child. I do, however, wish for her sake that she could just once achieve an academic award at the school assembly, participate in a spelling bee, or play on a sports team with her friends. I want her to experience play dates, sleepovers, and being a winner in a game. I want her to be included in private jokes and to be chosen first for a team during PE. I want the same things that every parent wants.
The Dread is inevitable, but I will not break down from the weight of it. I will bear it and I will prepare others who come behind me for the inevitable challenges of even the most amenable IEP meetings, hoping to somehow make it bearable for them too.
No, I am not anxious about the prospect of having to wrestle the services Angela needs to learn from district officials, but there is something else haunting my thoughts-The Dread. The Dread stems from knowing that when Angela's present levels are shared, I will grieve what is missing. As much as I prepare myself, it is painful to hear that my girl is years behind her peers in almost every academic domain. She will never catch up. The very kind teachers and therapists will emphasize the gains she has made and the amazing new skills she is learning. They will praise her wonderful social skills and that she is "a friend to everyone". And I will be immobilized by the milestones she has not met.
This is not my first rodeo and I have attempted to console myself. I tell myself that I am fortunate that I do not have the misplaced guilt experienced by some biological parents, who believe they may have contributed to their child's disability with their genetics. I tell myself, "We chose this" and "We knew what we were taking on". I remind myself that we have educated ourselves about Sturge-Weber syndrome and recovery from hemispherectomy surgery, and we have provided Angela with numerous opportunities and supports to maximize her potential based on what we have learned. We are doing our job. None of this makes a bit of difference.
I am overwhelmingly proud and grateful for Angela's successes. She is an outstanding individual who has risen above adversity and is thriving and growing beyond our expectations. I am not embarrassed or ashamed by her delays, nor do I wish for a different child. I do, however, wish for her sake that she could just once achieve an academic award at the school assembly, participate in a spelling bee, or play on a sports team with her friends. I want her to experience play dates, sleepovers, and being a winner in a game. I want her to be included in private jokes and to be chosen first for a team during PE. I want the same things that every parent wants.
The Dread is inevitable, but I will not break down from the weight of it. I will bear it and I will prepare others who come behind me for the inevitable challenges of even the most amenable IEP meetings, hoping to somehow make it bearable for them too.
Friday, December 22, 2017
Things are Changing
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!
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!
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.
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