Summer

This is how our summer is going so far:

Miss Angie is swimming almost every single day, sometimes twice a day.  She is taking lessons and her progress is amazing.  I am so impressed by the instructors at our pool.  They are patient and kind and always make sure she understands what they are working on.  It is the highlight of my day to watch her lessons after my day at work.

Toby and I celebrated our 29th wedding anniversary this week.  Our good friends, Jeff and Heather offered to come to Clatskanie to stay with the kids so we could get away for the weekend.  There are few people that we would/could leave in charge of our crazy household and Jeff and Heather are on the short list.  We were so grateful for our weekend, which we spent in Oregon wine country in the sunshine.

Yesterday we attended a permanency hearing for Angie's DHS case.  We have struggled with our relationship with the agency due to poor communication and frustration on our part.  At the hearing, we did not share the DHS perspective that Angie's adoption is "on time" when we are 13 months into a process we were told would take 6-8 months.  I am extremely proud of Toby for his request for specific dates when the remaining steps would be completed, even though we did not receive concrete answers.  It is disheartening to feel powerless in a process that means so much to us.  We believe that we are approximately 3 months away from becoming Angie's forever family on paper. Almost time to  start planning the gigantic celebration that will follow the finalization of her adoption!

Next week, Toby, Angie, and I will travel to Denver for the International Hemispherectomy Conference.  We are excited for Angie to spend time at a day camp with other children who have experienced the same dramatic brain surgery.  Toby and I are looking forward to hearing the presenters speak about what we might expect going forward and how we can help Angie reach her full potential.  I fully expect the experience to be life-changing for all of us.  And again, we have someone special, our daughter Jordan, who is willing to hold down the fort at home.

There is a theme here, as I write.  We are surrounded by special friends and family who are willing to come into the trenches with us to support our family.  Please know that we see what you do and are grateful for every one of you.  Your messages of support and prayers, gifts of time, and even brief "check-ins" to see how we are doing mean more than you know.  We are strong because of the team of people by our side and we do not question that for a moment.  Words are not enough to thank you.

Thank you for your prayers, my friends.  After my last post I received multiple messages with kind words, offers of prayers, a coffee card, meals, and flowers.  I never intended my story to make you feel you had to do for me.  I was holding true to my original commitment that this blog would be real.  But know that I am grateful. Your kindness has been a true gift.

We are plugging along and our strength comes largely from this girl:

Because of Angie, our days are filled with "I love you", "You are precious" and "I am so lucky".  Who can stay in a mood with all of that positive going on?  She embraces life with all she has got and she reminds me of all that is good.

Angie has become a pool rat since summer started. She asks to go swimming every single day.  This week she started lessons and she is having a blast!  I am surprised and thrilled at how free she is in the pool, unencumbered by the challenges she experiences on dry land.  She is amazing!  And so happy........

Toby, Angie and I will be leaving for Denver in about two weeks.  We are traveling to the International Hemispherectomy Conference where Angie will attend day camp with other children who have experienced hemispherectomy surgery.  While she is there, Toby and I will attend conference sessions about what we might expect moving forward and how we can best help Angie to reach her full potential.  We are extremely excited and I have no doubt that even among others with similar histories, our girl will shine.  She is so anxious for her first airplane trip.  We will make friends that we will have for a lifetime, who truly know what it feels like to walk in our shoes.

We have been asked about Angie's adoption.  It is still happening, although MUCH slower than we expected.  We will go to court again next week and we expect to hear the same story as last time.  DHS is overwhelmed, understaffed, and trying as hard as they can. We are tired, and so is Angie. She wants to be a Harris.  For now, though, she is loved and safe.  Some day she will be a legal member of our family and when that day comes, we will celebrate like crazy.  I can't wait.

We have so much to be grateful for.  Than you for reminding me with your kindness.  We have been surrounded by love when we need it most. That is what life is all about, right?  Showing up when someone is down and paying it forward.  I can't wait until I can do the same for you.

A Tough One

This is going to be a tough one.  I have avoided writing for the past couple of weeks because I have not wanted to spread my negativity to others.  It is mine.  Today, though, I realized I am not being true to my original commitment to be real and honest.  So, here it goes......

First, Miss Angie is amazing.  She is healthy and thriving and everyday with her is a gift.  She had a sleepover with some of her favorite people, went to a band concert where she tells me she danced during the concert, and she is excited to start swimming lessons, which she tells me EVERY SINGLE DAY.  She is doing "normal" like only she can.  In fact, I think she is the strongest one in the family right now.

We have learned that Baby Ezra has West Syndrome, which doctors identify as "catastrophic childhood epilepsy".  It is a lifelong disability causing permanent developmental delays. Some other test results are still pending, but this is what we know so far.  Ezra is at home again now and he is receiving strong steroid treatments for the seizures.  The treatment cost is an astronomical $2000/day.  Don't even get me started on how I feel about drug manufacturers and insurance companies.  Actually, the drug company has a program to pay the patient co-pays for the medication and Ezra's insurance company won't accept their payment. So many challenges ahead for little Ezra and his parents.....

Then there is Levi.  I have been particularly quiet on this subject.  Now, I am going to share with the hope that others will be educated and may be able to pay it forward to someone else who needs support and understanding.  Levi has Alcohol Related Neurodevelopment Disorder, commonly known as Fetal Alcohol Syndrome.  His biological mother used opiates, methamphetamine, barbiturates, and marijuana during her pregnancy as well.  Levi's brain is severely and permanently damaged and his condition was 100% preventable. He was not given a choice.  I could go into great detail about ARND and FAS but I will just share the basics:

Brain and central nervous system problems

Problems with the brain and central nervous system may include:

• Poor coordination or balance
• Intellectual disability, learning disorders and delayed development
• Poor memory
• Trouble with attention and with processing information
• Difficulty with reasoning and problem-solving
• Difficulty identifying consequences of choices
• Poor judgment skills
• Jitteriness or hyperactivity
• Rapidly changing moods

Social and behavioral issues

Problems in functioning, coping and interacting with others may include:

• Difficulty in school
• Trouble getting along with others
• Poor social skills
• Trouble adapting to change or switching from one task to another
• Problems with behavior and impulse control
• Poor concept of time
• Problems staying on task
• Difficulty planning or working toward a goal

Levi has every single one of these symptoms and some that are not listed.  Just one more fact: Alcohol use is far more damaging on the developing brain than drug use.

If you know our family, you know that Levi has received a variety of treatments for his conditions since birth, including several out-of-home placements.   In early April, we realized that we needed another secure placement for him when he started exhibiting risky behaviors, such as leaving home and school for hours at a time.  Children with drug and alcohol exposure are particularly vulnerable to becoming victims due to their poor reasoning skills and inability to sense danger or predict consequences.  Levi's social and emotional functioning level is at age 6 or 7.  We were terrified for his safety.

Unfortunately, the Department of Developmental Disabilities could not find a placement this time.  Levi became #16 on the waitlist and we were told placement might happen in about 6 months.  In late April, we begged for a "crisis placement" which is supposed to take 24-48 hours and we were again turned away.  We sought help at a children's hospital and with law enforcement-still nothing.

Last Friday, our worst fears were realized.  Levi was playing with matches in the school bathroom and he started a fire in the garbage can.  He was interviewed for over 2 hours, arrested and taken to the juvenile detention facility for 4 days.  I am not ready to write about that particular experience yet, but I will tell you this-it was devastating.  Levi is charged with three misdemeanor crimes and he is now involved in the juvenile justice system.  The school IEP team has determined that his behavior was a manifestation of his disability and he will not be expelled but we have chosen for him not return to school this year.  The legal process will take time and Levi will be held accountable for his actions.  So, indirectly, will Toby and I.  Toby is currently unable to work and is at home with Levi, who is under house arrest.  Levi is very, very sorry and regrets his actions, which is often not the case for children with FAS.

I know this is getting long, but I share it in detail to try to facilitate understanding. The situation is so complicated.  Toby and I do not believe that Levi should be relieved of responsibility for his behavior, but we do believe his disability should be considered and we believe it will be.  Our family has been treated with respect by school staff and by the juvenile case manager and they have educated themselves about Levi and his disability.  We are overwhelmed by sadness and feel that Levi, and our family, was let down by the systems that are supposed to support and protect children with disabilities.  

Please share our truth when you hear people gossiping about Levi.  We live in a small town and we know people are talking.  Please think of Josh and how this affects him when you consider telling our story.  Please pray for Levi as we continue to advocate for a placement for him where his needs can be met.  I appreciate being able to tell our story and be heard. Thank you to all who have already reached out to support our family. It means more than you know.

Mother's Day

I feel like someone punched me in the stomach today.  It was not the Mother's Day I had imagined.  Oh, there were many sweet moments and my husband and children showered me with love and attention.  Toby made me the farm table I have been dreaming about for Mother's Day and this is what it looked like today:

I am truly in love with this table and I think I will be spending all my waking hours here this summer.  It is perfect.  

Kirsten and Ezra stayed over last night so they could go to church with us this morning.  As we were getting settled at church, I held Ezra while Kirsten found a place to put his car seat.  Then the unthinkable happened.......Ezra began to have a series of small seizures as I held him.  Panic set in on Kirsten's face and I began to have flashbacks to the body-wracking seizures that we watched in Angie too many times.  We are fortunate to have a very calm, clear-headed EMT in our congregation and he came over and reassured Kirsten that his condition did not appear life-threatening.  Kirsten called her pediatrician, who suggested that she take him to the hospital to be evaluated.

I wish I could tell you what caused Ezra's seizures. but as so often is the case, the doctors do not know.  Kirsten left the hospital without any answers and she is now at home feeling frustrated and overwhelmed.  I can tell you with a fair amount of certainty how she is feeling, because I have walked in her shoes.  She is terrified to walk out of the room for a minute in case the seizures return.  She is fearful that the cause of the episodes is the worst imaginable condition.  She worries that he will suffer seizures while she sleeps.  And so much more.

I am a firm believer that God plans our lives so that our past experiences teach us lessons that we can use in our future.  Once we learn, we will be given opportunities to help someone else in similar circumstances.  This is the circle of life.  But, I want to decline.  I don't wish seizures on another family, but please God, do not give me this opportunity with this baby.  Keep him healthy instead.  I am terrified for Kirsten and would do anything to take away her pain and uncertainty.  But that is not God's plan in our lives.  He has something else in mind.

I am grateful I was there with Kirsten today.  God is so good.  He did not allow this incident to happen when she was alone.  She is strong and brave and she loves her son powerfully.  She is an amazing mother.  I am unable to decline the opportunity. We will weather this storm together, and probably many more as we raise our families.  I am her mother after all, and I am here for the long haul.

Eight Years

Eight years.  That is how long we have had the privilege of parenting Miss Angie.  Seven years since she started having life-threatening seizures and six years since we were told there was no hope for her future and that the State of Oregon preferred that doctors stop trying to save her life.  Five years since we fought for the right to pursue treatment anyway and four years since she had the brain surgery that saved and changed her life.  And ours.

I am not the same person I was eight years ago.  Not even close. I don't even know that person anymore.  Eight years ago, I did not know how to fight for my child's life like it was my own.  I did not know that doctors are not always right, and caseworkers very often are quite wrong.  I trusted professionals to know everything and did not trust my ability to make hard decisions for the best interest of my child.  I did not know the hope that comes from witnessing miracles performed through a child's life over and over again.  I did not know that a child could defy all odds and become an individual who inspires every person she meets.

I don't want that person back.  I am grateful for the lessons I have learned on this journey every single day.  I can see God's hand in every trial we experienced and looking back I can see what He has taught me through the difficult days and nights.  I am so thankful.

Angie has a very unique and definite purpose in this World.  I believe it is to bring hope to the hopeless.  She is meant to teach us that adversity does not mean defeat, it just means we have to try harder. She is here to model perseverance and courage, humor and strength.

I am so thankful for Angie.  She keeps me from getting too serious and uptight and she makes me laugh every single day.  I am grateful for the 2,917 days I have had her in my life and in my heart.  Happy Birthday, Angie Rae, you have changed my life for the better and I love you to the moon and back!

Hard Days

Today was one of those hard days.  If you are a parent of a child with special needs, or maybe just a parent period, you know the ones I mean.  The days when you sit across the desk from a professional and he or she tells you what your child is unable to do, and may always be unable to do.  What other kids her age can do.  What you MUST do to help your child, although the results will be uncertain.  They almost always throw in a couple of strengths first, but those you already know and you could have written the list yourself-and the list would have been far longer if you had.

The professional is just doing his or  her job.  Most of the them are really good at it and between appointments you can readily recognize their expertise.  But, today, in the moment, I was not thinking, "How amazing that this person went to school for 12+ years and has studied hundreds or thousands of children before mine".   "How magnificent that she works for a renowned children's hospital."  No. Today, I was sad.  Not surprised, angry, in denial, or suspicious.  Just sad.

No one wants to hear that your child's IQ is much lower than you were originally told.  After all, the IQ is the Gold Standard of human value, right?  Or, that the gap is widening between your child and her peers and you and the school are not meeting her needs.  Who wakes up in the morning thinking, "I hope today I will learn that my child needs far more than I have been providing".  At least by someone's self-determined standards. No one.

You know what, though?  At the end of the day, I will accept feeling sad.  Because along with the sad, I am grateful, joyful, privileged, and proud.  I have a child in my home and my life that was not supposed to live.  I will be sad today but tomorrow is a new day.  Tomorrow, I will have hope that Miss Angie has already overcome huge obstacles and I believe she will continue to do so every day she is on the Earth.  This child has a purpose and she is going to fulfill it, regardless of the predictions of professionals.

Don't get me wrong.  I am thankful for the professionals to give me a summary of Angie's skills and abilities.  The same summary will tell them how far she has come when she has her next assessment.  Miss Angie Rae (Grover) Harris will not be kept down by one assessment. She is powered by her own steam .  Tomorrow is a new day and she will amaze us all.  Hard day, please take notice.  You are not the boss of us.