Allow Me to Boast…

IMG_0387It’s rare that I update this frequently, but there’s a few things I wanted to tell you about, not the least of which was our vacation! Well, it was an overnight trip, at least. Thanks to the generosity of friends and “strangers”, we went down to Chattanooga for a night and it was glorious!

We’ve tried so hard in recent months to find ways to just breathe as a family, to enjoy each other, to relax and to laugh. Those moments have seemed elusive at best. There hasn’t been much levity in our home and the older children have been more than patient, as we spend so much time managing the logistics of Pearl’s care. They don’t complain. They just adapt and occasionally ask the in home therapist to take a look at their LEGO creations. There are times when its tough to watch your children having to figure out ways to navigate waters they maybe shouldn’t have to navigate.

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So we got away…and they played. And we laughed. And they went swimming and we ate everything in sight. We went to the hotel arcade and stayed up late in our hotel room. We even made it the aquarium! It was just what we all needed. I feel like we’ve all come home refreshed and ready to tackle this next milestone in Pearl’s life on Wednesday!

The plan right now is for her to go in on the morning of the 23rd, and they will perform a Nissen fundoplication and also put a mickey button in her belly so that she will no longer have a feeding tube down her throat. As of Friday, everything seemed good to go, but they were quick to tell us that if anything seems concerning to anesthesiology when we get there on Wednesday, then we will bail on the idea for the time being. There’s always risk associated with any operation, and since Pearl is Pearl, if they aren’t comfortable proceeding, then we are completely willing to heed their advice. The last thing any of us want is for them to attempt something they aren’t entirely comfortable with. Everyone that we’ve met thus far seems more than competent, and wants to serve Pearl in the best way they can. I don’t know if she could be in more capable hands. They’ve told us that we can’t really know what to expect in terms of in-patient recovery. It could be as quick as 3 or 4 days but also as long as a couple of weeks if there are complications. Please pray for discernment for the team, for an uncomplicated procedure, for quick recovery, and for the family to maintain perspective, gratitude, and joy through this season of parental shift changes and hospital stays. I will say that this hospital stay is very different than previous ones. This is the first time when we are going not because her survival may be in question, but because she is surviving well and we are looking at a way to help her thrive! We are grateful for that.

IMG_0327And speaking of gratitude, I want to quickly hit on my previous post… There’s a lot of ungratefulness and frustration tucked in there. I don’t know, maybe it’s not “tucked in there,” as I’d like to think. Maybe it’s blatant and screaming loud. Maybe offensively so, I don’t know. But here’s something I don’t want you to miss. Yeah, I get frustrated all the time. I sometimes have weeks on end where reception is fuzzy and everything appears through a dark, hazy, and sometimes-angry lens, and it gets pretty dark in my heart.

But here’s what doesn’t happen. God doesn’t quit. He doesn’t stop carrying my family. He doesn’t stop pursuing me. He doesn’t pin me against the wall and remind me that he has given me everything that we all prayed for. He doesn’t hang me out to dry, stewing in my own self-righteous entitlement. No, he calms my heart. He leads me beside still waters. He wipes the filth off of my lens, sends a plethora of perspective adjustments, and then sends me on an overnight with my family. Sure he finds me guilty of all of these things, but he did that a long time ago, right before he picked up the tab for that, too. He’s relentless in his pursuit. He allows me to sink below the water but never allows me to drown completely.

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All that to say, if you hang around me for more than 10 minutes, you’re going to watch me throw all my cards on the table and maybe you’ll see that I bent one of the card corners. It’s a mess inside my heart, but God is good. He never lets go, and my heart does not intimidate him. He knows what to expect from his sheep. That’s why he carries a rod and a staff. So you’ve seen that maybe my faith isn’t all it’s cracked up to be according to what you may have read in articles. Instead, it’s whom that miniscule amount of faith is directed towards that is more than he’s ever cracked up to be. There’s the good news. I’ll boast about that.

-Eric

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19 thoughts on “Allow Me to Boast…

  1. Eric,
    You speak so well and are very good with putting ur words in written messages…..I was so happy to see Pearl on Friday….she looks awesome!! 🙂 I will be praying for lil Pearl and your family as well….on a side note…your words from ur heart about ur faith touched my heart tonight as I am getting home from hearing bad news about my Father…..we must keep the faith and know God has a plan and he is leading us….thank you for shareing tonight…….I NEEDED IT! GOD BLESS U AND UR FAMILY!
    Ms. Mel

  2. I am so glad that you all were able to get away, the respite was no doubt long overdue. You gave us heavy stuff to consider, & I don’t think any of your readers expect you to be perfect backlit by His light. You can only hope to wake up renewed from sleep, to make it threw another day. My favorite part of today’s update? “…This is the first time when we are going not because her survival may be in question, but because she is surviving well…”. I believe that says it all. That you are doing an amazing job caring for Pearl, & trying to bring joy to all. Be blessed, you all have more cheerleaders than you know.

  3. So glad you got to enjoy time away, no matter how brief it was. God is good. I pray all goes well with Pearl’s surgery.You and your family are truly an inspiration to me. God bless you, Cindy

  4. My devotions this morning centered on God’s love and loving others. Eric you do a banged up job at that and by that I mean outstanding. There is no hypocrisy in you, you are transparent and so relate-able. God’s love is exposed in you and your family…that relentless love you just described! Believers are encouraged and God’s heart in them beats a bit faster, spilling out; non-believers are drawn by what is so foreign, so supernatural, to meet our God. I see the King’s pleasure in you; may you & yours continue to feel it!! Blessings & favor be upon you, my brother, and all your family. Prayers….

  5. I have enjoyed your blogs from the very first. I am amazed at what God has done for Pearl, not because I don’t think He can, but because He does and I am grateful. She is beautiful. Your big kids are terrific as well and you should be proud of them.
    I agreed with your blog last time and understand. I wouldn’t want an attitude to get in the way of superior care for my daughter. I shared that blog with my niece who is an RN at Rainbow Babies in Cleveland (PICU).
    Keep us posted and we will keep you in our prayers. Squeeze Pearl’s pinky for me.

  6. Thank you. I needed to hear that, not because I needed to know that about you, but because I needed to realize what is going on between God and I.

  7. We’ll be praying (extra!) for you tomorrow and in the coming days. Please let us know if there is anything we can do. –Beth S.

  8. We will be praying for the procedure to go well with Pearl and that she recovers quickly from the surgery. It is such a blessing to read your blogs and I am always amazed. PTL!!

  9. I lift her up to the Great Physician, to bless those in attendance w/ wisdom, knowledge and discernment that only comes from Him.
    And aren’t we grateful for that relentless pursuit of our Heavenly Father? That’s how we know what GRACE is!

  10. Eric,
    We are praying for Pearl’s procedure that she is having today. Praying for anyone that comes in contact with her today from her doctors to the people that help you get checked in today, also praying for your sweet family and what a testimony you have shared with us.

    God Bless you all!

  11. I am not as eloquent with my words but let me thank you for yours. I am inspired by your honesty. Not many of us admit our “failures”, but thank you for the reminder that God loves us anyway.

  12. Eric,
    Prayed for you all and Pearl–hope it went well today. Thanks so much for your blog– you give us so much in each post and remind us of the great God we serve Who always takes care of us!
    God bless you all!!

  13. thank you…I just found your site today, through a friend who shared your Open Letter…
    just reading through some of these last posts, and especially this one…I wish I could just bottle and share what you have said about struggles and dark and God with us and everything.
    I have 2 kids (and spouse) with a genetic disorder called Neurofibromatosis Type 1…the older of my girls has been battling diffuse brain tumors for 8 years. I am SO GRATEFUL for those 8 years, and at the same time, sometimes the darkness of the battle just … it doesn’t leave me singing happy inspirational songs, which I think is what some folks expect. Just thank you for the way you said this…my heart needed to hear this today, this road is so lonely.
    peace, and blessings to your beautiful Pearl & your beautiful family.

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