At the end of last week, we went to another pediatric neurologist for a second opinion on Will's treatment and medications.
First of all, it still seems like a huge undertaking to get an eight-week old to Sioux Falls and back - even if it is only for one appointment. What an adventure! :)
Second, the neurologist confirmed that we are on the right track for Will's injuries. He told us more information about his medication that made us feel more at peace about our decisions so far, so we are really thankful.
Third, (hear comes my little rant and pity party - don't say I didn't warn you!) even though we were very thankful for the second opinion, the day still seemed heavy and sad. The doctor was a little more factual and less sensitive when it came to listing all the consequences of Will's seizures and strokes. It is no fun to hear that Will's strokes were big ones. It is no fun to hear that developmental delays and things like Cerebral Palsy are on the list of potential outcomes for him. It is no fun to hear that his muscles are floppy and that he has low tone. I knew all of these things in the back of my mind - we really didn't hear any "new" news - but I had done such a good job of locking these sad things up and enjoying having a "perfect" little newborn. When we go to Will's doctor appointments, we have to rehash the trauma and relive the pain and grief over and over again. We are reminded that things are not okay. I am sick of dreading the appointments on the WAY to Sioux Falls and crying on the way BACK from Sioux Falls - full of grief, fear, anger, defeat...
As I was trying to hold back my emotion in the doctor's office, I was telling the Lord how much I wished I could go next door to another exam room to meet with God - face to face - for a THIRD opinion. I wanted to go into the next room and have the Great Physician tell me what He thought of Will's condition, what plans He has for our baby, what the prognosis will be... I have a feeling that the third opinion - the Lord's opinion - would be much more full of hope, mercy and grace. I have a feeling I would have left that appointment with happy tears and much more peace.
I know this is silly. All I have to do is pray and listen for the Lord's thoughts in regard to Will. I know He has already spoken so many words of encouragement and hope into our lives. I know He has already planned beautiful and supernatural things for our baby. But it is just so, so hard to remember all of these things in the face of such darkness.
I told Mark how I feel like the fight for Truth has been harder than it's ever been in my life. I am weary from the battle. I am weary from constantly fighting to believe that Will's future is hopeful and bright, fighting to believe that the Lord can and will heal Will in miraculous ways, that He will give Mark and I the grace to get through each day... I am fighting to believe that the Lord will give me enough strength to push Will and to coach him well through his physical therapy (even though I am a wuss and want to let him stop the second he starts crying). I am fighting to believe that God's plans for our family are good despite the fact that almost everything on every front in our lives continue to be stressful and tough. I am fighting to believe that God does want to heal Mark, who is really struggling with sciatic nerve pain (and has been for six months, progressively getting worse), and that His grace will be sufficient in the meantime. That God will continue to provide financially in the midst of the medical bills. That the Lord will strengthen our marriage, even in the midst of so much stress. That I am a good mom, despite the fact that I still can't produce enough milk for Will... That I will find meaningful community and friendships, despite not having time for any "extra-curricular" fun activities. That I am beautiful to both God and Mark, despite the fact that I've lost, like, hardly ANY weight since leaving the hospital... Blah, blah, blah. You get it.
Oh, how I need the Lord's perspective in the midst of so much darkness. I need Him now, more than ever. And, yes, that is such a good thing. Do you remember the old hymn "Turn Your Eyes Upon Jesus?" Mark reminded me of the lyrics a few days ago. Turn your eyes upon Jesus, look full in His wonderful face, and the things of earth will grow strangely dim in the light of His glory and grace.
Yes. I would like these earthly things to grow strangely dim. I think I need to be looking at the Lord a bit more these days.