A Fork in the Road

We all make choices.  Some choices are easy, some feel hard, and others really are hard.  We have some really hard choices to make in the coming year (or so), and would cherish your ongoing prayers for wisdom and strength.

Yesterday we made another trek to Oakland to meet another new doctor – a pediatric neurosurgeon.  The first time we asked to meet with him, he didn’t even want to bother speaking to us.  He said he could tell just by reviewing Ryder’s chart that he is not a candidate for any form of surgical intervention with regard to his nerves.  But that’s not good enough for us.  We insisted that he examine Ryder in person first, and then make a determination.  And if the answer remained the same, so be it.  But we couldn’t just sit back and take him at face value, left to wonder “what if?“.

Most of these appointments end the same way.  The doctors ask Ryder a bunch of questions, watch him demonstrate what he can and can’t do, and then they say “Well, this sure is mysterious!  Just keep doing what you’re doing and we’ll see you in six months.”  It’s easy to walk away from an appointment like that with our hope of recovery still in tact because no one who has said he’ll never improve has taken the time to explain why they feel that way.

Until yesterday.

After noting that our warrior’s right hand is significantly smaller than his left hand, Dr. Pang spent nearly two hours drawing diagrams and playing and replaying Ryder’s original MRI footage to help explain his belief that it is highly unlikely that Ryder will see any more recovery.  He had some very tough findings to share, and did so with as much compassion as possible.

I’ll spare you all the medical mumbo jumbo and summarize… (Please bear with the military theme that came about by accident.)

Basically, Ryder’s immune system mistook his common cold for a nuclear attack.  It rallied so many troops that they ended up fighting amongst themselves and decimated their own capital city, otherwise known as his spinal cord.  (He is, after all, a Barr.  We don’t do anything halfway!).  Unfortunately, the portion of the spinal cord that sustained the most damage is the innermost part that contains the most important data.  And the length of the affected area is so great that it has left us with no reinforcements. And while the muscles themselves still retain the ability to get stronger, the nerve endings that plug into the muscles can only go so long without hearing from the Commander (or receiving messages from the brain) before they die.  So while other kids with this same affliction are having surgeries that borrow nerves from other places to bridge the gaps and retrain the brain, we have nothing left from which to borrow.

This is devastating news.

And so we stand at another fork in the road.  The way I see it, we have three choices.  We can 1) take a knee… end the war… give up.  Or 2) we can believe this one doctor is correct.  We can continue with therapy for the time being, and make plans that could include amputation (yes, I said it).  Or 3) we can fight like hell to find another way.

I’ll give you one shot to guess which road we’re marching down…

We will continue with therapy because it’s still beneficial.  And we will be seeking a second and third opinion.  Not because we believe the diagnosis will be different, or because we’re waiting for someone to tell us only what we want to hear.  But because we believe it’s our duty as his parents to knock on every door and try to get information from as many different perspectives as possible before we make any unalterable decisions.

And we will continue to pray because we believe in the power of a mighty God who created entire galaxies with a single thought.  We can’t waste time or energy asking “why?” (except for yesterday in the parking garage, sobbing into my husband’s chest… but I’m only human.).  Instead we’ll ask “what’s next?” and wait to see what we can learn (about ourselves, about God, about medical technology, etc.) and what we can teach others.

God, the Great Physician, and the fiercest Warrior of them all, created this little boy and had a plan for his life even before it began.  He hand-picked Ryder especially for us.  And with His help, we’ll make it through this… whole and healed, floppy, or one-armed, we’ll win this battle because we’re not giving up.

If God is for us, who can be against us?  (Romans 8:31)

Please continue to remember our family, specifically our precious fighter, in your prayers.  He is such an inspiration to so many… he hasn’t given up hope and works so hard every day.  And he is encouraged by knowing he has your support.

5 Responses

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  1. Cindy
    Cindy May 17, 2016 at 2:37 pm | | Reply

    Megan, our prayers are,so with Ryder and you his family. Your courage and strength as a parent is so awesome. May God guide you with his wisdom as you continue on this journey.
    Thank you for the update as Rick & I think of you often. Sadly we know about the fight with medical technology and never ending red tape. I am glad you can have a good cry, it helps with the release and then let’s you refresh and get back on the ride stronger and more determined to keep exploring all options. God Bless you and family!

    ARABELLA WHITLOCK May 18, 2016 at 10:11 am | | Reply

    I will stand in agreement with you about how powerful and capable God is. Praying for your wisdom and clarity to hear God speak and guide you. Your momma’s heart is strong and yet so weak at times I’m sure. I appreciate and am amazed as I have been through your journey how you share your story and Ryder’s story with such vulnerability and truth. May our God move in a mighty way. Continue to push as you guys have and get 2nd, 3rd or 4th opinions. Stand your ground as you seek an answer from God, the war is not over and we will battle in prayer on your entire family’s behalf. May Ryder be empowered by God through all this to be a great witness (as he already has) to change the world for the Kingdom. I believe God is raising him up to do some incredible things that can change lives. Megan, tho extremely difficult you are an instrument and God is using you in a powerful way. May his love and strength pour over you each day.

  3. Sharon Conner
    Sharon Conner May 18, 2016 at 11:57 pm | | Reply

    Joe and I appreciated all the love, prayers and help that Glenna and her friends did for our Great-grandchild Ezra when he was hurt and they made meals for the family. It is heart warming to hear of special people helping others that are so in need. We in turnwill help Ryder with our prayers.I believe our entire family is praying for him, and have been since he was hurt! All our love and prayers to you and Ryder. sharon and Joe Conner

  4. Jennifer Fillon
    Jennifer Fillon May 19, 2016 at 7:25 am | | Reply

    hi megan! i heard from our aphi sisters that you’re going thru a difficult time in your life. i was very touched by your blog. i can only imagine the pain, frustration, and hurt that you and your family are going thru. i just wanted to let you know that i will be sending good thoughts and prayers your way for you and your family. i hope ryder gets his miracle, don’t lose hope. stay strong!
    -jenn fillon, aoe 🙂

  5. Shriner’s August 3, 2016 at 9:59 pm |

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