Do you ever have a day that makes you feel like God created it just for you?  Today was my day.  God knew that I needed encouragement and He sent me a special day to lift me up.  And it worked.

Last year, one of Angie's doctors from the epilepsy clinic at OHSU asked us to help him with a lecture.  He was going to be teaching 2nd-year medical students about rare neurological disorders, like Sturge-Weber syndrome, and how they are treated.  We were honored to be asked and to be able to help educate future doctors about recognizing these insidious disorders.  We got completely lost getting to the lecture hall, but still made it on time and it was as rewarding as we had expected.    Angie, of course, stole the show completely.

This year, Dr. Wray asked us to participate again and today was the day.  Dr. Wray gave me specific directions and a map and, guess what?  I got lost anyways!  Have you ever been to OHSU?  It is a complete and total maze.  Luckily, a first-year medical student took me under his wing and made sure we got where we needed to be-a 10-minute walk uphill in the rain, including having Angie get out of her chair and my hero carrying the chair down a flight of stairs.  He was late for his own lecture and he said it was worth it to get to meet us.   So sweet.

By the time we reached the lecture hall, with two minutes to spare, I was having an asthma attack from pushing Angie in her wheelchair up most of Pill Hill.  UGH!  I did not have my inhaler and I hacked and tried to catch my breath for about 15 minutes.  It was all worth it, though.  Dr. Wray told the group about Angie's history, having me give the specifics about her glaucoma and the onset of seizures.  He showed her MRIs before and after surgery (which I never tire of-there is only half of a brain there!) and actual photos of her brain taken during the surgery and talked about Sturge-Weber syndrome and the progression of the disease.  Doctor talk and such.  After giving the medical details, he asked me to tell the students what it was like to watch Angie have repeated seizures, fail treatment after treatment, and be told your child's best hope was having half of their brain removed. How was it to wait over 9 months for the life-saving surgery while agencies and managers fought over the details?  Oh my. That part is kind of blurry.   I hope my words were helpful to these humans who will someday be caring for precious angels like my Angie.  They were receptive and kind and had really good questions.  I appreciated Dr. Wray's focus on the human side of patients and their families.  It really meant a lot to me.

Here is Dr. Wray-one of Angie's heroes.  He actually participated in her life-saving procedure and was the first to meet with Toby and I after it was complete:

Towards the end of the lecture, Dr. Wray wanted Angie to get out of her chair to demonstrate some of her skills for the class.  She was very hesitant at first, but not for long.  Soon, Dr. Wray had opened a Hello Kitty jumprope and the two of them were twirling it around in front of the class.  You can see their reaction in the background:

The students were enthralled with Miss Angie.  Each time I finished answering a question she said, "Good job, Mom!".  She was just as emphatic the tenth time as the first and they loved her.  They asked her questions and she bravely bent down to the microphone to tell them, " I go to kindergarten school and my teacher is Ms. Stafford.  I have friends at school and I like to play with them at recess".  After the lecture, many students came over to greet Angie and she soaked up the attention.

It was perfect.  I loved watching Angie in the spotlight.  I loved telling future doctors how families are impacted by the experience of having a seriously ill child.  I loved having another opportunity to thank Dr. Wray for the gift of Angie's life.  And most of all, I loved that God created this day just for me.  Exactly what I needed.  Not a minute too late.  

News

Tonight I have nothing but news to share.  Good news, though.  My favorite kind.  I posted about Angie's insurance rescinding the authorization for her therapy until after her botox injections and another evaluation were completed.  Yesterday after her speech therapy, the director of the billing office said NO -she will have her occupational therapy today.  Yeah for Angie!

Angie had not seen Laura, her occupational therapist, since December (while we waited for the insurance authorization) and she had so many new skills to show her. She was amazing!  Identifying letters, counting, even writing her name.  Oh, and she swung on multiple swings, her favorite part of the hour.   Laura wholeheartedly agreed that it was time to try the botox injections because Angie's muscles have become much tighter over time.  Perfect timing, she said.

Today, Angie had the long-awaited botox injections.  I was not sure what to expect so I was surprised to learn that the injections were given while she was awake and without a local anesthetic-straight into her muscles!  Angie was given a medication to make her loopy but she was wide awake and watching the injections the entire time.  That girl!  She flinched but did not make a sound or move while "Dr. Steve" completed the injections.  Dr. Steve was hugely impressed and told her she was a rock star.  Well, yeah.  I am so humbled by her.  Every day.  I have been really frustrated with the ongoing behavioral challenges but then I have an experience like watching her today and I am overwhelmed by the honor of caring for this child.  And ashamed of myself. Why are we so quick to forget?

 Does she look a little loopy to you?  Definitely yes.

That's not all, though.  I also attended IEP meetings for both Levi and Angie this afternoon.  The details of the meetings are not as important to me as the overall impression I came away with.  Amazing.  We are so blessed to have a team of people who clearly have the best interest of children in mind.  They care deeply and they work long hours to develop the most effective program for each child they serve.  They are so undervalued.  It is a privilege to be a part of something that makes such a difference in our children's lives.  I almost feel sorry for parents who do not have a child with special needs because they will never know.  Almost.

So much to process tonight.  Tomorrow Angie and I will go to OSHU to participate in a lecture designed to teach medical students about Sturge-Weber syndrome and hemispherectomy surgery as a treatment option.  She is such a gift and a leader in many ways.  I have said it already, but I cannot say it enough.  I am honored to know her.

What a backwards system

  The state healthcare system is backwards.  You may already know this.  I know it firsthand and have been experiencing it for the past 14 years that I have been a foster parent.  The state denies necessary treatments, while asking parents to care for fragile, broken children without the treatment they need.  Children who need physical or mental health treatment more than anyone.  Backwards.

Because of Angie's challenges, she has needed numerous medical interventions.  I cannot tell you how many insurance denials we have received.  We have fought vigorously for her to get (necessary) treatment of every type.  On 3 or 4 occasions, we had to enlist the help of Betsy Johnson, our state senator, to advocate for Angie.  Ms. Johnson has come through every time and has gotten us what is needed.  But it shouldn't be that way.

The latest situation just has me burning up.  In early December, Angie had an occupational therapy evaluation, which was required before she could resume her therapy. The Oregon Health Plan only allows her to have a certain number of therapy visits at once before requiring a new evaluation, a wait for authorization, and a wait to see if there is a slot available for her.  This occurs about every 4-6 months.  Each time, the therapist notes that, yes, she still has half of her brain doing 100% of the work, and yes, she will still need therapy for the rest of her life.  I am exaggerating a little bit, but really?  A child like Angie should not have to go through this tedious process.

So, the evaluation was in early December.  This week-over 3 months later-I receive a phone call that the therapy is approved and she can start therapy this Tuesday.  Yesterday, I received a notice in the mail that because Angie is scheduled to have botox injections on Wednesday, the insurance company is rescinding the authorization.  Now, she must have a new evaluation after the injections before therapy can begin.  Did I mention that she has only half of her brain to perform all of her functions?  She needs the therapy whether she has botox or not.  Botox, if it is effective, will only give her increased range of motion in her arm, hand, and foot for a short time.  It is not a brain transplant!

I am tired of fighting.  We are not asking for anything extravagant.  Just the basics so Angie can reach her potential.  If we could get her covered by our private insurance we would.  We would have to adopt her for that to happen but we can't.  Why?  The state of Oregon has determined that her needs are too great for her to be placed for adoption.  Does this make sense to you?  Me either.  I am just venting.  If you are still reading, thank you.  I will, as always, jump through the hoops to get what is needed.  But wouldn't it be nice if I could use my time and energy more productively?  One of my favorite MLK quotes is this-"Our lives begin to end the day we become silent about things that matter."  So true.

Before I end tonight, I want to share something that happened on my way home from work yesterday.  As I was driving home, I was encouraged by the lovely, if fleeting, sun.  It was bright and beautiful.  And at the same time, it was raining lightly.  I was at a stop light and it occurred to me that this is my life.  Really beautiful and bright.  I have an amazing family and a job that I love.  Friends and supporters galore.  And a few raindrops along the way.  I can focus on either one I choose.  Most of the time I see the sun.  But other times it is impossible to ignore the raindrops.  Does this sound familiar?  I hope, my friends, that you also have more sun than raindrops. If you need an umbrella, let me know.

  I have been struggling.  This is a hard season for me as a mom.  We all have them.  For me, it is difficult relationships, physical and emotional exhaustion, and what feels like a heaping dose of disappointment.  Parenting is hard work.  You have them too, right?  Those tough days, one after another?  My day starts with the struggle to dress a non-compliant 5 year-old, punctuated with "I hate you" and "You are mean" followed by running away.  As I watch the clock to see how long I have until the bus comes.  Every.Single.Day.  Each morning begins with multiple doses of medications that I wish I didn't have to give my children.  We rush to get on the school bus (with or without breakfast, depending on his or her mood) and then I wait for the school to call with the first problem or conflict of the day.  I hold my breath and hope that when the call comes I am able to deal with the issue on the other end without some sort of government agency becoming involved.  I have a child that falls over and over all day long and I cannot help.  Another who is crawling in their own skin and cannot settle themselves.  I am not being dramatic, this is the real deal.

  In keeping with my promise to be real and honest here on my blog, I am writing the truth.  Years ago I began this journey as a parent to children with special needs thinking that I could save them.  I can't.  What can I do?  I can try every new intervention or strategy that I uncover in my research, which spans the globe.  I will search far and wide for the programs or plans that will help my children reach their potential.  I will not give up.  I am not done in.  But I am tired.  My heart hurts from the effort.

  How does a person cope?  Personally, I have submersed myself in worship music.  My faith is my comfort and I am grateful.  I plug my headphones into my computer and Toby reads my sign that I will be unavailable for the foreseeable future.  My sweet husband actually saw the signs long before the headphones went on today and has corralled the children for most of the day to allow me to revive myself.  And it works.

  We all have something, right? Some people drink tea.  Others run or do yoga.  I wish that was my solution:)  Some read.  Others write.  I have friends that go to the beach.  And friends that watch tv.  One friend flies off somewhere almost every weekend.  I can only wish.  In case you have not found "your thing", I want to share mine.  I challenge you not to be touched by this YouTube video by Kari Jobe (http://www.youtube.com/watch?v=3AdlHTgbZ9k).  I have listened and watched over and over.  And it works.

  Whatever you do, find your thing.  This life is hard.  My struggles are not unique.  Yours are important too.  And I care.  I do not write this blog to have an audience for my pain.  I want to reach out and let you know that I care.  Find your thing.  It is your season too.

 

How It All Began

  I have a story to tell you.  I want to warn you. I am pretty emotional about this topic and I may be a bit sappy along the way, so feel free to stop reading HERE.  If you don't mind a little emotional overflow here and there (maybe you even welcome it), read away.....

I want to tell you the story of How It All Began.  Back in 1999, Toby and I, along with our 3 girls, decided that we would do foster care for children who could not live with their biological parents.  Our family had provided short-term respite care for infants and toddlers for several months and felt this was the next step for us.  We completed the licensing process in February 2000 and after one short-term placement of a newborn, this little bundle of joy arrived in our home:

We were in love.  One week into the placement, Toby determined that this child could never leave our home.  I did not argue.  We never intend to adopt a child, but this child had already adopted us.  He was ours.  He just fit.  If you know anything about the government child welfare system, you know that it was not as easy as I make it sound.  We researched.  We advocated.  We fought-for two years.  We would have begged if it would have made a difference.  The child we had chained our hearts to was a Native American and there are strict laws protecting Native American children from being taken from their families and their heritage.  But still.  Eventually, we wrote a letter to the tribe, including pictures of our family.  We told them about our love for this precious child and our desire to raise him in a wonderful community surrounded with friends and family who loved him deeply.  It worked.  They agreed and released him and gave our family their blessing.  One hurdle crossed, but there was more.  He still had two biological parents who believed that he should come home to them.  And they had rights.

One of Joshua's biological parents relinquished their rights to him by not showing up to the termination trial.  The other did not.  We prevailed and were awarded the right to adopt him.  Our hearts soared but it was not a victory because someone else's dreams were destroyed.  Two parents who loved their child lost an opportunity.  Their choices and their histories were not conducive to parenting but they have no idea exactly what was lost and they never will.  We did not "win".

Tomorrow is Joshua Samuel Harris's 14th birthday.  So fitting-Valentine's Day.  If you know Joshua, you know his tender heart.  You know his quick smile and his easy way of talking to his peers and to adults.  His words are few and carefully chosen but when he speaks to you, you know that he cares.  He has experienced challenges as the sibling to two children with significant special needs, and it has made him a better person instead of making him bitter. He is empathetic and patient beyond his years.  I am protective of him because he would quickly give up what is important to him for the good of another.  I watch him play basketball, or anything else for that matter, and I am filled with pride at his positive attitude and resistance to adversity.  He does not give up or give in. He is a pleasure and a blessing to parent.

This is How It All Began.  Joshua's arrival was the beginning of a journey we never imagined, and that we would not trade for the world.  His arrival in our lives planted the seed that has grown into a beautiful garden.  A garden that we did not plan for, but that provides the beauty and new life that now defines our family.

Happy Birthday, Joshua Samuel.  You are loved more than you know.

The Great Adventure

Kelly Corrigan is one of my favorite authors of all time.  This morning I discovered an amazing YouTube video of her speaking about The Great Adventure of parenting.  According to Kelly, "Things happen when you leave the house".  Kelly's 5-minute video was like hitting the reset button for me and I thought about it all day long.  If you want to experience it for yourself, you can find it here: http://www.youtube.com/watch?v=vYmQs8bs1cY

Today, Angie and I left the house and "things happened".  We have been house-bound since Snowmageddon hit last Thursday and today was our first shot at freedom.  Angie had her weekly speech therapy appointment and once we (literally) slid down our driveway, we were home free.  At therapy today, I encountered another family who stole my heart.  I don't know if watching Kelly's video set me up for this, or if God just places these families on my path to give me a reality check.

The family came into the therapy waiting room and they caught my attention immediately.  Unfortunately, they did not speak English because there was something I wanted to tell them-I know.  The mother was clearly exhausted and overwhelmed.  I know.   I suspect that she knew that the news she would hear, even if she already knew it herself, was going to be heart-wrenching and life-changing.  I know.  The daughter, who was about Angie's age, was non-verbal and was unable to tell her mom what was wrong.  I know.  The child cried and complained the entire time they waited and Mom looked like she wanted to disappear under her chair.  I know.  The mom seemed embarrassed that others might think she was cruel or inept because she could not determine her child's need or how to meet it.  I know.  I cannot describe my helplessness as I sat across from them and could only express my empathy with a smile.  Eventually, the child's name was called and they left the waiting room.  My thoughts stayed with them, and I hope they felt them even though the language barrier prohibited me from speaking my heartfelt thoughts with them.  I wish I could share about The Great Adventure.  But not today.

Today, Angie had an amazing day at speech therapy.  I watched as she matched and named colors, named letters, and even matched a couple of sight words with pictures.  She was a rock star!  It was a  welcome difference from our therapy experience last week when she fell during therapy.  She lost consciousness, had a seizure, and spent the following four hours in the emergency department.  Toby rushed to the hospital to be with us and we went home with instructions to wake her every 2 hours to check her level of alertness.  Thank God her speech therapy is in a hospital-HER hospital:)

After speech therapy today, we went shopping at New Season's Market.  When we sat down to eat our lunch in the dining section I noticed a couple who were obviously brand new parents.  The father had a newborn baby strapped to his chest and after they sat down with their lunch I noticed them taking numerous "selfies", which I expect are now all over Facebook.  They looked tired, but thrilled to be out and about with their little miracle.  Such a different parenting experience from that of the family in the waiting room.  Or, from my current experience.  Or from yours.  Again, the magic of the Great Adventure is that our experience is OURS.  Today IS the Great Adventure and we waste it if we wish for the experiences of yesterday, or the experiences of other parents. 

I encourage you to check out Kelly Corrigan's video.  Whether you do or not, I suggest to you that life CAN BE the Great Adventure if you want it to be.  Live today as it is your last day with your family. Love your friends as if each one was your only.  You won't regret it, I promise.

The New Normal

I realized today that I have not written an update since my scary post about the return of the evil seizure monster.  We (once again) have a new normal.  The new normal is being watchful, but not obsessive, about Angie's demeanor and her movements.  Waiting, but still living.

Undoubtedly, there is more testing in Angie's future but we have faith in her doctors to decide what type and when.  We have increased her seizure medication and she has had a quiet week with a few staring spells but no progression of the seizures.  Last week, in the middle of it all, Angie had an appointment with her rehab doctor, "Dr. Steve".  Dr. Steve and I have had an ongoing discussion about when to intervene with treatment for Angie's increasing muscle tone.  On this day last week-I don't even remember which day because they are all blending together-we decided that it is time.  Angie is experiencing pain with any movement of her shoulder during dressing and her hand is curling up into the shape of a ball, despite our attempts to keep it open with a splint.  It is time.  Dr. Steve will inject Botox into Angie's shoulder, hand, foot, and ankle.  The purpose is to try to (temporarily) preserve as much range of motion as possible.  Amazing that Botox, a poison, is our best hope at this point.  Poison.  I am terrified but also committed to seeking the very best quality of life available to this little angel.  And confident that my God knows best and He will lead the way.

I never could have guessed what God had in store for me back when I became a mother-still really a child myself. Thankfully, our three biological daughters had few health concerns.  I never dreamed that He would choose me to parent a child who would experience a miraculous healing.  It still is miraculous.  Despite the re-appearance of some minor seizures, Miss Angie is living a vibrant, exciting life with half of her brain doing all of the work.  She alternates between truly naughty and the sweetest, kindest child on Earth.

This is Angie reaching out for Toby's hand before she was even awake after her hemispherectomy surgery:

Loving on her brother:

"Mom, is this dangerous?":

I think we would all agree that her life is nothing if not a miracle.  The naughtiness?  I think she has earned it!  Thank God that he has allowed us to have her here with us so we could experience it all-the good and the bad.  A miracle and a wonder.