setbacks

It’s been hot here this week, at least in my opinion.  I’m a big baby when it comes to heat.  We’re keeping a little kiddie pool filled on our porch for the kids to play in and cool off, which they often swim in in their undies and then run around the yard like little wild indians.  We try not to appear too white-trash but sometimes you do what you must to keep kids outdoors and away from screens while it’s hot and humid.

June has been sort of up and down.  My brother and his new bride came for a visit early in the month after their honeymoon to Iceland, and we had a blast soaking up as much time with them as we could during that weekend.  Phoebe is quite attached to her new auntie.

I took Phoebe for a weigh-in recently and found she had lost a little more weight and her BMI has dropped again from 7% to 4%.  I know overall since her diagnosis we have seen her gain about 5 pounds and gain a few inches in height, but the fact that she keeps gaining and losing and not having the kind of “catch-up” recovery that the research suggests she should has me worried.  We’ve been keeping a food journal the last week and going over her caloric intake with her nutritionist and she believes we should try and get another 400 calories per day into Phoebe.  That’s NO SMALL FEAT, I tell you.  It’s hard not to be discouraged and to feel like we are facing impossibilities.  It’s hard to not grow weary in this work and throw my hands up in frustration.  But sometimes you go on simply because you just have no other option.  This is the hand that has been given us, and this is the work the Lord has given in this season.  It makes me fall on my face a lot, yet I can see so much good in it all, even though I find my soul complaining often.  Some days are good and we feel strong and capable, other days the fear rages and the weariness threatens.  I have learned to be honest with the Lord and to just walk with Him in it all.  I cannot tell you what a comfort the Psalms have been to me in this season.  I am listening to them constantly on Sandra Maccracken’s new cd Psalms and also Shane and Shane’s Psalms, Vol. 2.  I’m reading them daily in Tim Keller’s book The Songs of Jesus.  I cannot tell you how often I don’t have words, yet the Psalms somehow impart them and pull the words out of my soul in prayer to God.  His Word is like oxygen to me.  We press on in hope and trust.

I’ve been helped by Sara Groves’ words in this video as she shares some about her struggle with depression and anxiety, specifically her question “What is the Gospel that saves me?”  When the anxiety builds, I come back to this.  What is the Gospel that saves me?  Health?  Ease?  A thriving child?  These things are legitimate longings of my heart, but will my soul survive if God doesn’t give these things?  At the end of the day, my hope isn’t in a certain result, it can’t be, because that is a frail hope.  At the end of the day, my hope must be in Jesus and the promise of a secure future with Him no matter what comes on this green earth, a future where He will finally heal all disease and right all wrongs.  I am beginning to understand Jonathon Edwards’ plea: “Lord, stamp eternity on my eyeballs.”  If I can shift my perspective, usually my view of the present changes and I am able to find my way through.

By the end of the summer if we haven’t seen considerable growth in Phoebe, our nutritionist is recommending we seek a second opinion by a pediatric celiac specialist, which will entail some travel to either Georgia, Boston, or Chicago.  Pray with me for growth?  And for wisdom and endurance in the journey.

In other random bits and pieces of news, I’ve been taking a few photos for my dad and husband’s building and remodeling company for their website and also to make a little extra income.  We were out snapping pictures of a gorgeous deck they built recently, and the kids were happy to see daddy and what he was working on.  I had to snip off my little Noah-man’s beautiful curls this morning.  He needed a bit less hair in all this summer heat, and I needed to see his eyes again.  I don’t do a terribly great job, but at least it’s free and he doesn’t mind my imperfect cuts.

I still love June, even with all of its ups and downs.