On Second and Third Opinions and the Battle for Truth

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.  

Dear Will - Seven Weeks

Dear Will,

You are almost 7 weeks old now.  

You are growing fast!  You are over 10 pounds, and starting to fit into 3 months clothes...except for pants.  You have a tiny waist and no butt.  

You are SO smiley and social.  If I had a nickel for every time someone commented about how social and interactive you are, I'd be a millionaire.  You don't really care about toys - you just want to look at people's faces, smile at them, and coo and gurgle your stories to them.  Sometimes you stop sucking your bottle or nursing, just to take a break to smile at me.  When you wake up on your own, you are super smiley and happy.  When I wake you up, you are very, very grouchy.  

The braces on your hands (see pic) are working well!  Instead of you clenching your thumbs into your fist, you are relaxing your hands more, and sometimes your thumbs even go outside your fist now!  Hooray for occupational therapy and little therapy gadgets.

You went to your first wedding last weekend!  You were so good.  Your buddies, Grant and Emily, held you the whole way through so that daddy could usher and mama could sing, and you didn't make a peep.  Good job.

You sleep very well at night.  Last night, you went to sleep at 9 PM, woke up at 2 AM to eat, and slept again until 7 AM.  You are so nice.  You must know how important mama's sleep is to her.

We are doing tummy time like crazy, and I think your neck is getting stronger!  Your physical therapists are helping us with lots of exercises and ways to help you grow strong and big.  I have started to do massage with you, too.  I think you like it - but only because it is another opportunity to smile and talk to each other.  Well, I take that back.  You  like it when I massage your legs, but your toes are ticklish, I think.  I will try not to tickle you so much in the future, okay, buddy?

You have a major receding hair line.  Your head is growing faster than your hair, so you are getting a mullet, kind of.  Classy.  Good thing you are still adorable.

You spit up...a lot.  I am doing laundry like crazy, and I make you wear a bib almost all the time.  You are a happy spitter, though.  After you puke, you usually smile and think it's funny.  You are SUCH a boy.

We have more doctor appointments scheduled for you to talk about your medications and to get some second opinions on some things.  I am trying to research your conditions and your meds so we can ask good questions.  We don't like having you on such strong medication and are nervous about its side effects.  We are also pretty skeptical about giving you your two-month vaccines, but that's a whole other story.  We are praying that God would help us make good decisions for you, little man.  We are doing the best we can!

We love you, so, so much, Will!  Happy 7 weeks.

Love, Your Mama

Dear Will - One Month!

Dear Will,

Happy One Month!  Can you believe we made it this far?!

You are smiling so much now!  You are starting to coo and try to talk to us!

You got braces for your thumbs this week.  You have a tendency to put your thumbs into your fist, rather than outside of it.  The braces make you look like you have boxing gloves on - especially when you're kicking and punching when you're mad!

You are 8 pounds and 15 ounces, and you grew an inch already!

Your umbilical cord stump fell off, too.  Your belly button looks so cute!

You have started to sleep in four hour chunks through the night.  Praise the Lord!  You are such a good baby.  We still sneak naps when we can, though!

You are too long for some of your pajamas, but then, other longer pants fall off your little bum.  I have a feeling this will be the start of our problems in looking for clothes for you.  You are very, very long, and very skinny.  

You are finally done (or almost done) peeling!  

You had your "newborn" pictures done with Tara Christians this past week.  You sprayed Tara, me and your daddy with pee twice, spit up on all three of us at least twice a piece, and pooped all over Tara's baby blanket.  Way to make your mark, buddy!

We gave you your first REAL bath last night.  You weren't too sure about it, but then we found out that you like the water hot, like your mom.

You are having fun doing tummy time!  We are working to build big and strong muscles in your neck.  You do a great job most of the time, but when you are tired or hungry, you pitch a fit and hate it.  Your dad insists on doing it, even when you are angry.  He just wants you to be ready for football.

You love to be held.  When you are awake, you insist on snuggling or being in your baby carrier, close to mom.  You are such a softie.

You made your first trip across Iowa this weekend to visit Grammy Pammy, Papa, and your aunties.  I barely get to hold you anymore, now that they're around!  

We love you so, so much, Will!  

Love, Your Mama

Dear Will - Two and a Half Weeks

Dear Will,

You are two and a half weeks old already!  

You smile, but we still have to work really hard for those smiles...  Will you give them out more freely soon?  Please?  

Once, I could tell you were dreaming.  You smiled really big and then giggled.  I think Jesus was giving you a dream about getting into mischief with your daddy.

You don't cry very much, which I am really thankful for.  You do cry when your dad and I are dwadling around changing your diaper or clothes and you just want to EAT.  Sorry about that...

We can tell you're irritated when you start to kick and punch your little fists.  You can kick and punch up a storm!  I know you are upset, but we can't help but think you are really cute when you pitch such a fit.  You were so rowdy in my tummy - now I know what you were up to in there!

Your skin is still peeling like crazy. 

You are such a boy.  You will grunt and grunt and hold your breath and push until you pass gas (as loudly as your dad) or poop your pants with gusto.  Really Will, it would be more polite if you were a little more subtle about it, but I suppose a guy's gotta do what a guy's gotta do.  I forgot to mention that your burps are very loud, too.  You are ALL boy.

The last two nights, you just haven't been able to get settled.  You will only sleep when I hold you and then we fall asleep together for hours.  I am wondering if physical touch will be your love language?

You are kind of lazy when it comes to eating.  You get really worked up about being hungry in general (also like your dad), but then when you get what you want, you either overeat until you puke...or you just fall asleep eating.  Either way, you love to eat.  You are growing fast!  

You cross your feet, one over the other, like daddy, too.  If I put socks on you, one falls off, inevitably, within about three minutes.

I like to sing to you when I rock you in the nursery.  Our favorites are "All night, all day, angels watchin' over little Will..." and hymns.  Hymns?!  Who knew we would love to sing the oldies together.  Your dad likes to sing "Lean On Me" with you - even though he doesn't really know the words to the song.  I have also caught him singing "Hakuna Matata" with you - he doesn't really know those words either, but he is very enthusiastic in singing made up words with you.

Your daddy likes to call you his "little dude nugget"...  Weird, I know.  He said that it is because you are like a real dude - a real man, but you are tiny...like a nugget.  Like a chicken nugget?!  Not sure.  Ask him about that someday.

Love you lots.  Looking forward to celebrating Mother's Day AND your dad's birthday tomorrow!  Hooray!

-Your Mama

Ten Happy Things...

Enough gloom and doom.  Today is a sunny day, I had an extra hour or so of sleep, and life is good.  

Here are ten meaningful and shallow things I am thankful for and happy about...

1. Mark - How do single moms do it?  Seriously.  I have no idea...  I have always been thankful for such an incredible husband, but I am extra extra thankful for Mark now...  He has been more selfless, more loving, more gracious, more attentive, more strong, and more encouraging than ever.  Oh, how I love him.  I think I am spoiled in having such a great hubby.

2. Will's Smiles - I never knew babies could smile so early!  I know I am super biased, but I still think his smiles are the cutest thing ever.  Even in the midst of being super overwhelmed, one smile just makes it all worth it.  They are magical, somehow.  

3. Sleep - I knew that having a newborn would require much less sleep...but I did not anticipate this little sleep.  Little Will seems to have his nights and days mixed up a bit, so sleep for mom at night is a rarity these days.  HOWEVER, this is a thankful post, so I am extra, extra thankful for the sleep I DO get.  When I crawl into bed, and when Will is quiet or being watched by someone else, it seems like a luxury and is oh-so-sweet and extra fun to look forward to.

4. Psalms - Up until Will, my favorite books of the bible were Job and Lamentations, and my least favorite book (or close to it) was Psalms.  I prefer stories - not poems.  But now?  Now I love Psalms.  There's something refreshing about seeing David feel sorry for himself, whine a bit and get frustrated...all while, two seconds later, praising the Lord for His goodness and steadfast love.  In the past, it seemed schizophrenic and a little crazy, but now, it seems refreshingly raw and real.  

5. Encouragement - Oh, how we are loving your Facebook messages, texts, cards, sweet words and yummy meals!  We are so, so thankful for so many loving, thoughtful and selfless friends and family.  Mark and I have both been in ministry since college, so we are used to being on the giving end of things.  To be on this receiving end has been humbling.  We have been so blessed.  Thank you!

6. Help - Evidently, it DOES take a village to raise a child!  Oh my word.  I am all the more thankful for my mom and my mom-in-law.  They've cooked, cleaned, encouraged, and snuggled Will while I've slept and caught up on other things.  Praise the Lord for help and support.

7. Breast Milk - Though my heart has been sad about not being able to provide as much milk for Will as I have wanted to, our sister-in-law, who is also breastfeeding, has been super generous in giving us a ton of her extra milk.  Now, instead of having to "top" Will off with formula, we are using her milk instead.  Holy smokes.  I can't even begin to articulate how special this has been to me.  Breast milk is another thing that seems magical these days, so being able to feed Will without formula is something I am treasuring.

8. Home - No offense to the NICU, but I really hated that place, and I am really loving being at home.  We've been transitioning out of being in a sterile system and into our own comfy rhythm - away from wires, electrodes, pokes, and alarms.  I am extra thankful for our privacy, the familiarity, and the peace that comes with being in our own place.

9. Will's Health - Though we had a rough start, and the future looked really grim at first, Will is doing really, really well right now.  He seems to have a pretty mild temperament, and only cries when he is hungry.  He is doing all sorts of "regular" newborn things, so we are optimistic.  Though we can get ourselves worried sick thinking of all the "what ifs" of tomorrow, today is really good... 

10.  Can I be shallow for a second?  I love not being pregnant again.  Sleeping on my stomach and not feeling incredibly bloated and huge is just grand...  I like Will on the outside world better than in my stomach.  :)  Now I just have to figure out how to lose all the extra weight he left behind.  That's what I get for all that chocolate!! 

So, so much to be thankful for and happy about!  The Lord is so good to us!

From Psalm 5 - But let all who take refuge in you rejoice' let them ever sing for joy, and spread your protection over them, that those who love your name may exult in you.  For you bless the righteous, O Lord; you cover them with favor as with a shield.

Initiations, Weaknesses & Strengths...

I think yesterday was an initiation of sorts!  We had our first DeYounge family outing...to the doctor in Sioux Falls.  Fun, fun... :)  

I am pleased to announce that we made it.  We made it through two bouts of nursing in the backseat of the Buick, problem-solving through a I'm-crazy-hungry-feed-me-meltdown, a couple of diaper changes on my lap, a record-breakingingly quick run to Target for wipes and being poked and prodded at the doctor's office...  I can't say it was pretty or very put-together, but we DID it.  Phew.  How do you mamas do things like this everyday?  Teach me...

The doctor appointments were fine.  No new news.  Will is gaining weight like a mad man and doing all sorts of "regular" newborn things.  We are praising God for some sense of normalcy in the midst of the chaos.

Call me a jerk, but I still hated the appointments.  I hate talking about things like strokes, seizures, and brain bleeds.  Sometimes, I find myself pretending like none of these things ever happened, so having to deal with these topics at appointments makes it all too real again.

On the ride home, I was thinking about the power of these words - stroke, seizure, bleeding...  Every word has some sort of connotation...a feeling or idea that pops into your mind when you hear the word spoken...  When I hear "stroke", "seizure", "bleeding" - especially in regard to my tiny baby, my heart just sinks.  These are such nasty words that come pre-packaged with such nasty connotations, feelings and emotions.  "Stroke" is full of hopelessness.  "Seizure" comes with fear.  "Bleeding" is a loss of control and weakness.

Yuck.

I'm not saying there's a demon lurking in every corner or trying to overspiritualize this, but I am not okay with the way the enemy can/could use these words to promote despair and anxiety.  I am not okay with how "beat up" I feel when I think about them.  Just because these words - labels, even - have been spoken over our son, they do not need to hold him (or us) in bondage.

It makes me think of the passage in II Corinthians 12...  "My grace is sufficient for you, for my power is made perfect in weakness.  Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong."

If our weakness really is the Lord's strength, and if our weakness really is the place that the Lord's power can rest on us, then Will's seizures, strokes and bleeding - those labels, those insults - can be delighted in as the Lord uses them to display His glory, to give Will a testimony, and to show His healing power.  These hardships are special and beautiful and strengths in Will.

But why, oh why, do I hear those words and still my heart sinks...?  In my mind, I know these things about the Lord are true, but my heart hasn't quite lined up with all of it yet... He isn't finished with me, evidently.