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.....