Journey to Jesus

Here goes the rewrite.  …after losing probably 1.5 hours of work.  Boo.

I want to give a bit of a back story to bring those of you up to speed who may not know what has been going on with our family, more specifically our little girl Lydia.  She is 20 months old.  Last September-ish we noticed that her right eye had some nystagmus, basically her eye bounces back and forth when she tries to focus on something.  She has always had nystagmus but it got worse last fall.  We saw one of the pediatricians in her pediatrician’s practice in October.  She recommended that we see an optometrist.  We did that.  He was really great and worked diligently to examine Lydia.  We had to visit twice to get a complete exam but he threw around the idea that she may have ocular albinism.  He talked to our pediatrician after her return from maternity leave.  They both decided that we needed to have an MRI done to ensure she didn’t have a brain tumor.  I had Knox right before Thanksgiving and we waited for January to come.  It felt like such a long wait.  I am a Pediatric Hematology/Oncology nurse so this wait was arduous.  We prayed and sought the Lord for faith and good results.  The optometrist told us her vision was pretty poor but that he would unlikely correct her vision until she was 3 or 4 years old.  Her MRI came and went and it was clean.  No brain tumors! Whew!  So we relaxed.  We saw her pediatrician again who talked with the optometrist and they gathered that we should take her to an ophthalmologist (an eye doctor with a medical degree).  We saw him on Valentine’s Day.  We went in expecting a follow up visit in a year or so with the same recommendation that the optometrist made…glasses in a few years.  Nope.  Momma was just that on that specific day.  Our ophthalmologist rattled off a few things which included special testing with probable sedation that would need to be done in Michigan or Wisconsin.  We were floored.  He needed to test her for retinal dystrophy among a whole list of other diagnosis.  Wow.  After a number of people had spoken quite highly of this ophthalmologist I was sure we would do whatever he asked of us.  So after quite a bit of finagling which included paperwork, phone calls and the like we were on our way to the Kellogg Eye Center to see a retinal specialist.  This dude is basically known worldwide for his study of the retina and our ophthalmologist thought it necessary that we see him. 

This brings me to last week.  We were planning on leaving on Monday night to drive as far as we could while the kids slept.  Although our new minivan purchase is basically rockin’ our world with our also new dvd players, we thought 10 hours on the road in two days may be a bit much for our three little ones.  So after a very long night packing, planning and preparing we hopped in the van at 1:30am.  Nuts, right?  Yep.   We are Hamptons.  Calvin stayed up with us as we packed.  He is crazy and cute and kept rattling little nuances about being big and not being tired.  Adorable really.  J  So we put Lydia in the van and drove away, shrugging and laughing at one another.  We figured even if we made it a few hours   down the road we would be in better shape.  Then we heard the puking.  Yep, rite of passage for all parents I guess.  Lydia was puuuuukking!  Our girl is a sleeper and I mean a good one and I woke her in the middle of the night.  So I thought she was probably just car sick.  She was smiling afterward with no fever so our determined little selves kept upbeat.  We cleaned her up at WalMart and bought all the necessities to keep on keepin' on.  Ten minutes later, same story.  We headed home!  This had me a bit anxious.  Oh my.  The next morning we got up and were on the road by 10:30am.  Not bad.  Our trip was really uneventful.  It was quite fantastic.  The kids were awesome.  They watched movies, played with their toys and we stopped when we needed to.  We got to the hotel, swam, ate dinner and settled in.  The kids were in their beds by 7:30pm after all that craziness and I knew then that God’s hand was upon us.  Despite the bumps in the road, I just felt His presence.  We were peaceful, not the kind of feeling that is natural or normal but the kind that only comes from the Father.  My mom (who is slightly fantastic) flew in from Southern California where she had worked the previous couple of days, then took a cab to our hotel (which she graciously paid for) and laid her head down at 2am to take care of the boys for us the next day.  I had a hard time sleeping that night but mostly I was overcome with gratitude for all the beauty in our family.  I laid there praying and praising God for His goodness.  If you don’t know already, I wrestle with God a bit over suffering, His Sovereignty, and His goodness.  I struggle in my faith sometimes.  I just do.  It just doesn’t always come easy.  So I laid there and worshipped.  I laid there appreciating that He had providentially given us a text in John 4:46-54 (Jason has been preaching through the book of John for months) on the Sunday prior to our departure and that I was blessed to be in the service.  As of late, I am in the nursery or RHC Kids Ministry every Sunday to get some new things rolled out.  I was blessed beyond belief by hearing God’s Word and was able to get a sweet glimpse, a taste of the goodness of Jesus.  I was moved so much that I just sat there and cried and prayed and listened fervently.  It was incredible really.  So I laid there in bed thanking Jesus with hope for our tomorrow.  Having felt a bit schizophrenic in my faith walk with Jesus, it was refreshing in a way that words just can’t wrap around.  The Living Water can truly quench what nothing else had touched in all of my lame attempts at satiating this endless tug and questioning in my heart.  I fell asleep with all of His goodness surrounding me and mine. 

The next morning began with a bit of a rush.  Mom took care of business for us and we headed to the hospital.  They started our day by putting us in a pitch black room for 30 minutes to adjust Lydia’s night vision to test it in the ERG (electroretinogram…basically like an EKG for the eye).  Lydia laid her sweet little head on my chest and I snuggled up to Jason in that dark room.  We sang a little, made silly sounds, giggled and rested.  There was bit of irony as we sat there in the dark with the question of whether our girl may one day live in a completely dark world.  Instead of running to the angsty place that I do so often, I rested in Jesus.  We just soaked one another up in those 30 minutes of time.  It was lovely.  The testing doctor and tech came in with red flashlights kind-of like caving caps (what are those dang things called?).  We stepped into the room and they began by placing tons of eye drops in her eyes.  She really loved that (note sarcasm).  We then turned her around on my lap and I held her arms while Jason held her head still.  They placed lenses that hold both eyes open with wires hanging out of her eyes as well as a third probe on her forehead.  Weird.  They pulled a bowl that flashed lights in her eyes up to her face and we held her as still as we could.  She kicked, bucked, cried, screamed.  The angst was building.  You could tell that both the doctor and tech had high doubts that we could complete this test.  I asked if I could sing.  They quickly agreed.  By the third song, a worship song we often use to sing her to sleep, she just relaxed in my arms.  I nearly lost it.  I just held her and sang my heart out to Jesus into her little baby girl ears.  She was sweaty, afraid, overwhelmed and then she just wasn’t.  We proceeded to finish the test with a few fusses and cries but outside of one of the lenses popping out during a few minutes the test went beautifully.  This was one of the top things on my prayer list.  I know beyond a doubt that the Holy Spirit just did fine work in that room.  So many doubts and fears were just melting away.  God used such an experience for His Word to come alive in my heart.  Jason and I both just gushed about how good she did.  The testing doctor and tech did the same.  She was just the same jolly, silly little thing after the test.  We quickly saw the genetic counselor as Lydia bopped around the room pushing her babies in her stroller.  What a morning!  We grabbed a bite to eat then waited to see Dr. H…the man of the hour…the best in the world at this stuff.  He came in and interrupted Lydia’s play time which did not make her happy.  He gruffly spoke to her with, “Well, you sure are cranky!  I haven’t even touched you yet.”  Dude!  She is not even 2 years old.  Really?  Anyway, he talked for a few minutes and basically told us that he has ruled out quite a number of things but doesn’t have a diagnosis quite yet.  He believes she either has retinal dystrophy (basically a blanket term that means her retina doesn’t function normally) or ocular albinism.  Her ERG was obviously not normal and both her day and night vision are affected.  He quickly asked if we had any questions.  I was a bit floored by his lack of bedside manner, but proceeded with a few questions.  Essentially, he couldn’t answer whether or not she would go blind.  As young as she is, her eyes may develop further and we could even see improvement in her vision still but she also may have degenerative eye disease.  We just don’t know.  He didn’t feel rushed to do further testing until she could cooperate and said as such.  He was cold and calculated, which was annoying but he is right.  There is no treatment for either diagnosis.  Ocular albinism is not degenerative, which is a little encouraging.  He does want us to come back in 9 months and he also wants to do an OCT (Ocular Coherence Tomography) which is basically like a cat scan of the eye/retina.  He did examine her but didn’t try nearly as hard as our optometrist or ophthalmologist back home.  I was a bit disappointed with him.  However, I believe that God did a mighty work for us and through us on that trip.  We see her ophthalmologist next in the middle of May.  Although we don’t have concrete answers we know that God is not surprised by anything.  She is in His hands.  We trek on and we pray for healing.  After all, more than anything in the world, Jason and I want for our Lydia to have spiritual sight.  We want her to know and love Jesus more than anything in this world.  We know that He knows what is best for her and for our family.  In the meantime, we stand in faith, trusting our God for the work that he sustains and continues in us.  Although I don't always understand God and His mysterious ways, in my heart I sense His goodness.  From my favorite movie of all time, I leave you with this…

After all, he's not a tame lion.