Tuesday, January 23, 2018

A 9 Year Old Warrior and a 6 Year Old's Faith

John turned nine years old on Sunday.  It is hard to believe he is nine but possibly even harder to believe that Meade and I have been parenting for over nine years now!   In her book Bird by Bird, Anne Lamott quips, “When a child comes out of your body, it arrives with about a fifth of your brain clutched in its little hand.”  So, if you do the math, that would leave me with zero brain.  Try not to laugh too hard! 

We always miss John’s twin, Warren, but January 21st can be particularly challenging.  The Lord graciously provides in that it usually works out that John has something fun to do with a friend, another family, teacher or therapist on his special day— with amazing people who adore him and who do not carry the same mixed emotions we carry into John’s birthday.

This year John’s beloved “K/Caties” (Katie, his devoted physical therapist of 5 years, and Catie, his former teacher and dear friend) planned an entire day to take John to the Georgia Aquarium.  They were so thoughtful and wanted to make sure he had his communication device and his best chair, which required them to take our handicap van.  As an aside, my grandfathers passed away a little over a year ago (on the same day – January 12, 2017), and one of them left his handicap van to John.  The timing was perfect and not something we could have anticipated, as you always imagine these next steps to be a ways off.  What a blessing it has been!   Anyway, you can see that John had an absolute blast on his birthday.  Thank you Catie and Katie!!

 Next, we want to thank you for your faithful prayers and for checking up on John since his procedure last Tuesday.  I also have a cute story to share following the medical update.  I am sorry I haven’t been able to share many details.  It is a slightly sensitive matter in that this procedure is still experimental.  We have been following the work of a premier medical institution for over seven years hoping John would eventually qualify for one of its clinical trials. Over the years, we have seen that this procedure is completely safe for children with cerebral palsy and that many trial participants have had positive outcomes, some gaining speech and significant motor function.  However, John has yet to qualify for the trials for various reasons. 

We still hold out hope that at some point John will get this treatment through a federally funded trial, but in the meantime we were able to find a way to privately access this treatment.  Even better, we were able to do this locally with no subsequent down time for John (we have known several families who have had to travel outside the country for similar treatments).  It consisted of a simple IV transfusion that lasted about twenty minutes.  John was so brave and kept his chin up; he truly is a warrior, the most inspiring one we know.  We were so grateful to have this opportunity, even if it amounts to nothing.  It could take several months to see if there is any improvement.  Regardless of the outcome, we know John is worth it, and we hope he always knows that we will never give up.  Feel free to email me if you want a short blurb with a few more specifics.  Thank you for your continued prayers!

Now for the cute story. Prior to the procedure, we were explaining as best we could to the boys what was going to happen to John.  We encouraged them to pray for John, and we would all take turns.  We explained that we were praying the procedure would even help John talk and walk.  As you know, it was delayed on Tuesday, so I ended up being the only one with John when it actually took place, and Meade was with the other three boys (they had a big time at the park, Home Depot and Mellow Mushroom).  Over pizza, Daniel piped up, “Daddy, I hope John talks and walks!” 

It would be several hours before John and I made it home.  I came in wondering where Daniel was, and Meade reported that Daniel had said he was tired and had put himself to bed (something that has never happened in his 6.5 years of life).  However, after a few minutes, Daniel quietly came downstairs and started studying John.  I greeted him but he kept his eyes fixed on John, expectantly saying, “I want to see John talk.”  I was confused at first, but then realized that this precious child with his simple yet profound, take it at face value faith trusted that the Lord would use this treatment and our prayers to heal John.  He fully believed he would come downstairs to finally hear his brother speak.  I held him close, told him how sweet that was, and explained that this procedure was hopefully part of the healing but that it would probably take some time; I encouraged him to keep praying as all miracles aren’t instantaneous.  Daniel quickly slipped back into bed, having accepted my explanation but not realizing what an impact his childlike faith made on Meade and me that night.  Is that not a precious and pure picture of how God made us to be and how He wants us to be, even after life has knocked us around a bit (or a lot)? 

I may have lost some of that pure and instinctual trust, but my heart resonated with my son last Tuesday night.  My spirit quickened as I recognized a quality I desire to possess.  That is how I want to approach my Abba Daddy who calls me his beloved.  I want to trust that He has the very best in mind for me, that His ways bring life, and that He has the power to bring it all to pass.  

“For those who are led by the Spirit of God are the children of God. The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship. And by him we cry, Abba, Father.’ The Spirit himself testifies with our spirit that we are God’s children.  Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.”
-Romans 8:14-17

By the way, this little cutie Andrew turned 4 on the 9th!  
We sure love you, buddy!

No comments:

Post a Comment