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......

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

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.

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.

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.

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.

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!