Thursday, May 5, 2016

What to say...

Dear ones,

It's hard to know what to write at this moment.  Sometimes silence seems safer.  Sometimes silence happens because there is just no time to form the words.  In my case, it's a mixture of both.  It wasn't until I chatted with a friend a couple nights ago that I realized that I haven't even kept my prayer warriors up-to-date on the new challenges we've been experiencing.  Communication like this is a commitment I just have not been able to squeeze in, a fact that I regret and hope I can fix in the forty minutes I have right now.

For the past two months, we've been struggling as a family as we watch Ben regress physically and continue to struggle with many of the issues that led us to pursue the Brain Balance Center.  As chief cook of all his crazy food and head chauffeur of our trips to the Center in Fort Wayne, it's been hard to keep motivation for all the facets of this program as we have seen so little progress since our initial couple of months.  For those familiar with the program, let me just share that we have been very faithful to the food, environment, and exercise components that we are responsible for.  But at this time, we are struggling with the meager returns for what has been a monumental investment of time, money, and sanity for our family.

With this conflict in my heart, I met with the director of the Center two weeks ago for Ben's third quarter review.  She confirmed everything that we'd been feeling.  Ben hadn't had the results that they were accustomed to seeing at the BBC.  When she consulted with headquarters concerning Ben's case, they suggested that we probably had not been following the at-home components of the program.  When she assured them that this was NOT true, they were baffled as well and suggested a few adaptations.

First of these changes being an adjustment in the focus of Ben's sessions.  Normally each hour-long session is half sensory exercises and half cognitive skills.  Since Ben's cognitive skills are off-the-charts, his time at the BBC will be adjust to 45 minutes of sensory and 15 minutes of cognitive work.
Second, we will relax a bit at home.  Instead of calling Ben in from the great outdoors to do exercises twice a day, we're allowing him to be outside, play baseball, swing, run, and just be a kid in the afternoons.  We'll commit to doing exercises at least once a day on nice days (and might get to it twice on rainy days), but our entire family just needs to take a step back from 60 minutes of daily torture... I mean, exercises with Ben.  We can definitely stay positive through 30 minutes though.

Third (and HUGE for this momma), we'll be introducing gluten back into Ben's diet.  So far Ben has had gluten for over a week and has been doing fine with it.  We haven't seen a significant change in behavior, sleep, or attitude; however, I am a much more sane person since I'm not juggling one more ingredient to avoid.

Fourth, and this is where I started to cry in the meeting, Brain Balance is offering us another month of sessions (free of charge) to give Ben the opportunity to finish more of his goals.  While this may seem like a great thing (and it IS a kind offer), I wept from exhaustion at the thought of yet another month being taken over with trips back and forth to Fort Wayne.  At this point though, I'm already feeling better about moving forward with June since the cutback in exercises and diet restrictions has lifted HUGE burdens off of my shoulders.

We'll finish what they are offering us and will give it our best, but our best at this point is a reduced version of what we started with.  We are a far less energetic version of what we were at the beginning of this adventure, and for the emotional health of our family, we just can't keep up the same pace any more.  It's taken over 6 months for us to finish 62 sessions (with 10 more to go this month), and I just need to take a breath of fresh air, have FUN with my kids, and eat a cookie... a delicious, gluten-filled cookie.

I'm intentionally looking for ways to redeem our trips to Fort Wayne in June, including frequent trips to the zoo and parks in the morning before our sessions in the afternoon and picnics in the park rather than our worn-out tradition of stuffing food in our faces as we drive the hour to the Center.  Also, we're taking a two-week break at the beginning of June to allow the three oldest to enjoy swim lessons.

If you're one of the precious ones that has been burdened to pray for us, I thank you from the bottom of my heart and please keep praying for strength and grace to flow in our home.  If you're one of the dear ones who has learned to cook a GF, DF, EF meal for our family, you have blessed my socks off!  And if you're one of the many people who have handed me a Starbucks card with a smile and a hug, you have probably saved our lives as we drive home from Fort Wayne during what is normally naptime.  I swiped my very last Starbucks card yesterday.  Miraculously, when one runs out, another one appears from an unexpected source.  If that isn't a miracle of loaves and fishes proportions, I don't know what is!!!!

We are STILL praying that he will have a breakthrough in his last two months, but we know that regardless of outcomes, we have learned to walk with our Savior in a new and desperate way.  Thank you for showing His love and for holding us up in this journey.  You are loved and appreciated!  Gotta run...

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