So much pain

It has been nineteen days since Angela's feeding tube was removed and she has been in serious pain on every single one of those days.  It is too much.  If I had known this would happen, I truly think I would not have asked for it to be removed.  It would have been better for her to have a feeding tube she may not need than to have this pain.

We are stuck now in what feels like an impossible situation.  The site where her tube was placed is not healing and the acid from her stomach is breaking down her skin and causing excruciating pain.  The doctor may eventually close the wound surgically (which has been our preference all along!) but now the risk of infection is too high.  She cannot have surgery until the site is healed and the site won't heal because she needs surgery.  See the problem?

Through it all, Angela has been so brave and stoic.  When she cries in pain, we know how severe the pain must be because this girl never cries.  She insists on going to school, even though we sometimes have to pick her back up again and bring her home early.  I know for a fact that I would not be able to hold it together like this if it were me.  It is so hard to have her scream and cry in pain and be helpless to take it away.

Today we went back to the hospital to meet with her surgeon and with a wound/ostomy specialist.  We were given a new treatment plan and we pray it will bring her some relief.  We will keep plugging along and the thing that will propel us is this brave, strong, and amazingly, still smiling girl......

Setting the Bar

Angela Hope has been one busy girl lately.  This week, she saw her rehab doctor, "Dr. Steve".  We talked before the visit and agreed that we would ask to have her feeding tube removed.  This is something Toby and I have wanted for months but we wanted to avoid the hassle of getting permission from the state so we were waiting until Angela's adoption was finalized.  Angela, however, was more apprehensive.  She has had a g-tube since she was 13 months old and she considers it to be a part of her.  Ultimately, she agreed and Dr. Steve removed her feeding tube on Thursday.  The procedure was emotional for me because her feeding tube served as a safety net when she was sick but not having it provided one more way for Angela to be more similar to her peers than she is different and that is most important.

I have been thinking about this concept a lot and you know what I realized?  Angela IS more like her peers than she is different.  She loves to dress up, play outside, FaceTime with loved ones, and have sleepovers.  She hates math, having her hair combed, and broccoli.  Pretty typical, right?

The day after Angela's g-tube was removed she was invited to join a school friend for Lunch With the Mayor.  She was having some complications from her procedure but she was determined not to miss the event.  She rallied and had a wonderful time at her lunch date.  After a long nap at home she finished the day with a birthday party for another friend.  If I had been her shoes, there is no doubt I would be on the couch for the day and would probably be there still.  

Today was another big day.  This morning, despite the pounding rain, Angela Hope threw the first pitch for the Opening Day of the 2017 Clatskanie Little League season.  She was so excited to be asked and we were touched beyond belief.  Once again we are reminded of the love and acceptance for Angela in this small community where we live.  We wouldn't trade that for anything.  To live in a community that is inclusive and that opens its arms to children with disabilities is rare and we are thankful to call Clatskanie our home.

After the opening ceremonies we were able to attend the second birthday party of Angela's biological sister, whom she affectionately calls "Peach".  "Peach" is being adopted by a good friend and we are dedicated to raising the girls together and fostering their relationship.  Angela has a unique ability to understand the relationship and she adores her little sister.  It makes my heart happy to see them together:

And then, my favorite time of the day:

This is when I invariably lay my head on her cheek and breathe her in.  I honestly stay in this position for as long as she will let me and I think of how grateful I am to be joining her on her journey.  The privilege is not lost on me and I do not take it lightly.  Angela Hope Harris has set the bar high for me, and for all of us, in regard to how we live our lives.  According to her example, we should not take a single day for granted nor miss an opportunity to experience joy or be kind to others.  We should live life fully and enthusiastically.  No excuses allowed.....

A Good Day

I don't know if you know this about me, but I am a huge fan of Chip and Joanna Gaines and their show on HGTV called Fixer Upper.  I love watching them transform old, dated homes into beautiful new spaces.  There are lots of metaphors for life within the show.  One of Joanna's favorite sayings is, "Today is a Good Day for a Good Day" and that's how I feel about today.

This morning, Josh was voted onto the Junior Prom Court.  I had to keep it a secret for two whole days and it was not easy.  Isn't he cute?

Sadly, I could not attend the assembly because of a mandatory state meeting in Vancouver.  I have been really heartbroken about having to miss out, but nothing will keep me away from the actual coronation on Prom Night.  I promise not to be too embarrassing.

After my meeting, I stopped at the Vancouver Target to pick up a few things for our trip to the Pizza Show in Vegas next week.  Yes, there is a convention for EVERYTHING, even pizza.  Now, you know it is true.   And in Vegas, no less.  As I entered the checkout line, a woman tapped on my shoulder from behind.  "I know you," she said.  I wracked my brain but came up empty.  Nothing.  "Do you have a foster daughter?" she asked.  Then, "Or....did you?".  I said, " I used to be a foster parent."  I truly had no idea where she was going......She smiled and said, "You were with Angie".  Oh, YES!!!!!!  I told her about Angie's recent adoption and that she was no longer in foster care.

We started talking and she said that she worked at Randall Children's Hospital in the PICU and she remembered us.  "How COULD you?"  I asked.  It has been years since Angie has been in the PICU (Thank God) and thousands of children have come through since.  And yet, she remembered Angie by name and somehow remembered me too.  She had two very busy young children shopping with her so I did not question her about how or why Angie stayed in her memory but I would really love to know.

I know enough though.  I was reminded today that Angie's journey with Sturge-Weber Syndrome and Hemispherectomy surgery has not been for nothing.  God does not waste any opportunity to show His power and grace and I believe that He is using Angie to touch lives that we don't even know about.  I have shared other similar encounters before and I don't think today will be the last.  I am grateful for the reminders that Angie's pain and hard seasons are being used for good.  She is a conduit for hope and joy and we have no idea how many lives she has touched.  We will never know.  I will never get tired of hearing stories of her impact on others and I do not think today's encounter was a coincidence.  It was a Good Day for a Good Day.

Life After Adoption

Miss Angela Hope Harris has now been adopted for 40 days.  Most things about our lives have remained the same as before but a few have changed.  One important benefit of Angie's adoption is that we are able to add her to our private health insurance and hopefully increase her access to vital medical services.  In foster care, Angie's state insurance stopped authorizing laser treatments for her port-wine birthmark  over a year ago, which are very clearly medically indicated and not cosmetic, unless you ask the Oregon Health Plan.  We could not wait for her to be eligible for private insurance.

One small detail......we are losing our access to our current insurance and must change providers this month.  Not such a big deal, except that Angie's adoption paperwork was submitted with the WRONG NAME on it and we have to wait for new documents.  Add to that the stress caused by the requirement that she be added within 60 days of her adoption and you can imagine our distress.  Why is it so complicated???  I truly cannot stand health insurance companies.  And don't even get me started on the uncertainty about healthcare created by the current national leadership.

Despite these concerns, we are experiencing unimaginable joy to know that Angela Hope is our daughter, now and forever.  Despite the hard mornings, and sometimes evenings too, the physical exhaustion of caring for a child with extensive needs, and the unknowns about her future, we could not be happier.  This child captured our hearts from Day One.  She is such a special gift.

I suspect that we will continue to experience this mix of frustration and joy throughout Angie's life.  Most parents do, right?  We have had some pretty unique circumstances, but all parents have their own challenges and experience similar emotions.  Parenting is hard, no matter how you slice it, and we are just grateful for the privilege of guiding this special girl along the way.  Thank you for hanging in there with us during the easy and the hard days......it is what keeps us going day after day.

Angela Hope Harris

I have delayed writing about Angie's adoption ceremony.  I am not sure why.  The day was perfect.  Exactly what we imagined.  Magical.  And now, Angela Hope Harris has realized her dream and we have achieved our heart's desire.

Never again do we have to ask permission to take a family vacation, schedule a haircut, plan educational or medical services, or hire a caregiver.  It feels like freedom.  Do you know what else it feels like?  Terrifying, overwhelming, and hard.  I am not going to sugarcoat it because I committed myself to honesty and transparency when I started this blog.  Parenting this beautiful child is HARD.

Toby and I now are solely responsible to care for this beautiful girl for whom the future is still uncertain.  Her journey through Sturge-Weber Syndrome and its complications will never be complete.  Despite her lifesaving surgery and its success, she is permanently disabled and the challenges will change and develop as she does.  We are not young parents and it can be terrifying if I let myself spend too much time thinking about it.

After major brain surgery, few children escape the behavioral challenges that result from disrupting the structures of the brain.  It is almost inevitable.  My reality right now is that Miss Angela Hope expresses her hate for me almost every morning as we plod through our morning routine.  Sometimes she throws in some name-calling that could make a sailor blush.  She does not hate me permanently, in fact she usually loves me again before the bus comes to take her to school.  Before that, though, I can easily become defeated.  Trying to get her dressed, medicated, and prepared for her day can feel like too much to manage some days.  Sometimes the behavior is repeated at bedtime.  It is overwhelming and it is HARD.

Sometimes I wonder what I think I am doing, pretending to know how to parent such a complicated child with complex needs.  What makes me qualified?  Am I qualified?  I still don't know.  But do any of us?  I think it just comes down to putting one foot in front of the other and taking on the obstacles as they come.  We are all the same in that regard.  Kids surprise us on a daily basis and we do our best to pretend we are prepared all along.  Parenting 2.0.

I am thankful for this life.  God chose me to be a mother to Angela Hope Harris and I am grateful for the honor.  Toby and I are fully committed to her.  We will walk into the future with her knowing that there will be hard days but they will not overshadow the blessings.  She was and is, most definitely, worth the wait.

What Does Adoption Mean?

Adoption has been at the forefront of my mind recently, for obvious reasons.  It seems almost surreal to be so close to Angie's adoption becoming a reality after many long months of delays and detours.  Eighteen months to be exact.  To an outsider adoption can seem to be a simple legalization of a relationship in a formal ceremony but it is actually much more complicated than that.

I have been going through our family pictures as I work on a project for Angie's adoption.  Family pictures call up a spectrum of emotions as the times and places of the past are revisited.  Our pictures revive memories of our boys' adoptions and their entries into our lives as infants, Josh at five months old and Levi as a newborn.  We have a ton of pictures and image after image tells the story.  Our boys, and Angie after them, were immediately loved and accepted by our family and friends.  They gained more than just parents when they entered our home, they gained a village.

The images I love most are those that bring to life the pure joy of our biological children upon meeting and getting to know their new siblings.  With each addition there was new little person to love and they rose to the occasion without exception.  Playing in the snow, hunting for Easter eggs, opening Christmas gifts, graduations, vacations in the sun and teaching them what it means to be a Harris.  Our children have been permanently changed by the experience of adoption and I think they would say the adoptions have had a positive impact.  I don't mean to gloss over the challenges.  There have been difficulties and disappointments to be sure.  Adoption is not for the faint of heart, but it is worth every challenge, struggle, and uncertainty.

Angie's adoption process has been far different than our first two adoptions.  Who is to say when it truly began?  When she entered our home and hearts as a newborn?  When we became a permanent foster placement for her?  When we asked to adopt her the first time?  The second?  Or third?  Or when she stated she did not want to be in foster care anymore?  Our commitment to her has been real and unwavering all along and only God knew how her future would play out.

The stark difference in Angie's adoption is that she understands exactly what it means to be adopted.  Eighteen months ago, while driving in the car, Angie told me, "Mom, I don't want to be a foster kid anymore", and I knew that we had to prevail in our quest to adopt her.  I would ask again.  I did, and here we are.  Angie has shared our frustration at what seems to be an endless process.  She has advocated to change her name and she has shared her excitement to become Angela Hope Harris.  Our girl, in true form, has taken charge of this matter and has let us know she will not be defeated by difficult circumstances.

This is what adoption means......finding the people you belong with and making them yours.  Gaining a village of people who make you feel special.  Having siblings to share the journey with and to cheer you on.  And, knowing exactly who you are and what you want.  The legal ceremony is just the ritual that marks the end of the process.

We are beyond excited for Angie's adoption and we hope you will join us on our special day.

Farewell 2016

I know that we still have a couple of weeks left in 2016 but I am ready to say good-bye.  2016 has not been my favorite and I am done with it.  There has been political unrest, too much violence, personal disappointments, family illness, and frustrating unfinished business.  Farewell 2016, you can go now.

This time of year always makes me a little bit nostalgic and this year is the same I guess, despite the disappointments.  I am not unable to appreciate the blessings that have been bestowed on me and my family.  We are strong despite the challenges of the past year and we have not been toppled by the hard days.  I am proud of my children and their responses to discouraging situations.  My sons and daughters are resilient and they depend on one another for strength.  This makes me proud and fills my heart.  2016 has not broken us.

I have some specific hopes and dreams for 2017.  Angie's wish to be adopted will be realized and she will legally become our daughter after spending over 3100 days in foster care.  My grandson, Ezra, will be healthy and happy after a treacherous and unpredictable first year of life.  The monstrous remodeling project that has hijacked our Christmas will be completed and our home will be dust-free at last.  My parents health will be stable.  Our businesses will prosper.  My boys will continue to develop into the amazing young men they are becoming and my three adult daughters would be happy and fulfilled.  Too much to ask?

I have few other hopes too........that our community could find healing and we could learn to accept and forgive one another.  That children in foster care would always have a loving alternative home where they are safe and that the justice system would do its job and punish those who inflict pain on others.  That we could all set our political views aside and realize we are more alike than we are different.

Okay, I am asking for a lot, but I have learned that if you do not ask the answer is always NO.  I am going to dream big for 2017 and see what happens.  Farewell 2016.