Touched by an Angel and Mother's Day Musings

I am SO overdue for an update!  So sorry, dear friends.  Please know I am truly thankful for your prayers and interest in the goings-on in our humble home.  It is sometimes very hard to get the thoughts and photos together for an update, but I have finally managed.

First, Happy Mother's Day!  To all of you who are mothers or who have loved a mother or who hope to someday be someone's mother - blessings.  Mother's Day is always filled with mixed emotions for me.  I love my mother, and if life were that simple, I might never know there was more to Mother's Day.  But now I am a mother.  Each of these three treasures is only in my life because of God's graciousness and because of the selflessness of the women who carried them and heard their first cries.  In countries where, in many cases, it is harder to choose life than to end it, I believe that these women, the first mothers, fought for life.   I may never meet these mothers in this lifetime, but it is my deepest prayer that someday, I will meet them in Heaven, and together, we will rejoice in the love we have shared for these children.  I rejoice because I get to parent the children of their bodies, but I weep because they don't get to know the incredible human beings that these children are - - how strong and smart and funny and resourceful and fragile and beautiful each child is, unique in her own way.  I want to ask these mothers so many questions, and I would love to just share with them a glimpse of who their daughters are becoming.  I want to tell Amelia's birthmom how brave she is becoming - how she took a part in a musical, even though she was afraid, and performed with such a sparkle!   I want to tell Anna's birthmom that the LORD has worked so many incredible miracles for her, and she is now learning to listen and speak! I want to tell Lucy's birthmom how insanely funny I think she is and how much pure joy she brings to our lives. I want them to know how much I love their girls - my girls.

Next, an update on Anna --  Anna and I traveled to Los Angeles, California, this week to meet with the clinical staff at House Ear Research Insititute.  The House Clinic is famous in the US.  They performed the first single-channel cochlear implant, and the doctors and engineers at House are the ones who invented the Auditory Brainstem Implant (ABI).  Yes, we met some of the very people who invented the technology that is now helping Anna.  We had to get an FDA exemption for Anna's mapping to happen here in the USA, but House got it, and Anna was seen there for her first post-activation mapping session.  In a mapping session, they stimulate each electrode in the implant, one by one, to see what Anna is hearing and then work on fine-tuning the equipment to maximize Anna's outcome. 

Understanding mapping -- It was explained to me like this: if you had a person who had been blind since birth, and all of the sudden, you turned on the brightest light and opened the window all the way to let the bright sunshine in, you would "blind" the person - or at least overload them - and sight would be painful and unpleasant.  But, if you open the window a little at a time, and just let a little bit of light in, so that the person can begin to perceive shape and shadows, and gradations of color, and if you continued that over time, then the person would gradually increase what he or she could see.  Instead of being painful, the person would want a little more light and a little more light.  In mapping, they are trying to 'crack the window' of sound for Anna.  They want her to have enough to hear, but not so much that hearing is unpleasant or so overwhelming that it has an  - ironically - deafening effect.  In the ABI world, I am learning that slow and steady is the way we walk.  Right now, Anna is responding to sounds on each electrode.  However, in some cases, her responses are inconsistent and hard to gauge.  Anna wants to perform well, so sometimes she "reacts" when there isn't any sound at all.  Other times, her reactions seem to be genuine responses to auditory input. 

This is a video from the session on Day 1.  We got better responses on Day 2, and I hope to be able to share some of that video soon.  Click here to see a few minutes of a mapping session:  http://youtu.be/EHWq3czZyrk

 

She's one-in-a-million -- I don't know the statistics, exactly, but I do know that the device manufacturer told us that there are only 7 children in the USA who have received the ABI implant. The child who is the furthest out from implantation has been implanted one year and is younger than Anna.  There is at least one other, older child in the US who has an ABI by a different manufacturer.  I think he is at least a few years post-surgery.  Basically, one of the challenges, is that in the USA, they don't have anyone to compare Anna to as far as assessing her progress.  Anna's age and lack of complicating conditions makes her different from most of the other children who were implanted.  On the one hand, it's hard to not know what to expect as far as milestones.  On the other hand, that means Anna can be the pace-setter.  The House experts are very guarded as far as their prognoses and hopes for Anna.  It can be discouraging at times.  However, there was a very bright spot in the mix.  One of the clinicians at House who regularly works with adult ABI patients reported to me that if he had an adult patient who was responding to as much as Anna was at this point, he would be - his word - "ecstatic."  The adult ABI patients are almost always people who have heard before, so it's a little like comparing apples to oranges, but still, since Anna's is older than the other kids being mapped, I felt like the adult ABI perspective was really hopeful.

Touched by an Angel -- On the plane home, I was thinking over the previous days, and honestly, feeling overwhelemed and a little discouraged by how far on this journey we still have ahead of us.  I was praying for Anna and just really wishing for some kind of roadmap.  When we got off the plane, Anna and I were riding on the tram to connect to another terminal.  An old American Airlines mechanic was on the tram, and he asked about Anna.  I gave him a brief overview, but I never mentioned prayer or miracles or any of the like.  He looked right into my eyes and said, "Ma'am, you just keep praying.  He hears our prayers.  And she's an orphan, so He really cares to answer prayers for her."  I was astonished.  He went on to share that he had a 26-year-old son with autism, and all his son wanted was to be able to drive.  He said his son prayed every day for two years for this, and now, his son drives.  He was just SO encouraging to my weary, traveling soul.  I know the tears spilled over in spite of the crowded tram.  When Anna and I got off the tram, we said good-bye, but I left feeling like my spirit had been touched by a messenger from Heaven - just a little nugget of encouragement to never give up in the prayer-fight for Anna.

Building one another up -- When I told a friend some of the discouraging parts of my trip to Los Angeles, my dear, wise friend reminded me that none of those people created Anna and none of those people hold in their heart the master plan for Anna - hearing or deaf or something in between, Anna will do what HE wants Anna to do in the perfect season of His planning. We just have to remain steadfast in faith and prayer, working to do our part to give Anna all the tools she needs, both in terms of sign language and in terms of access to hearing technology. Friends who remind me of these things and who encourage when the road seems long are truly precious to me!

All in all, things are good.  We are very blessed.