Sweet Tripp Roth earned his wings Saturday morning. His little body had been struggling mightily for the past few months, the effects of EB (Epidermolysis Bullosa) completing its savage toll in every imaginable, horrific way. His devoted mama, Courtney, had already begun the plea to God to take him to safe territory but was steadfast in her determination that her baby would remain as comfortable as possible while in her care. Considering the nature of the EBeast, that’s a daunting task at best.
Thinking about Tripp and knowing what’s ahead for Courtney has provided an emotional return to our own surprise assignment over 14 years ago… not that it’s ever far from my mind. I thought my heart would implode after hearing our third baby Jeffrey’s diagnosis and prognosis (spinal muscular atrophy, the bonus being the deadliest form). My initial bargaining prayers to God to save Jeffrey in the earthly sense were revised constantly over the next few weeks, ending with pleas to save him in the heavenly sense after our little guy let me know he was ready. Are you, Mama?
From The Jeffrey Journey:
At noon, Jeffrey needed morphine. An hour later, he needed morphine again and suctioning, and a monumental turning point occurred: he clamped his lips shut for both the morphine and suctioning, pleading with his dark chocolate eyes for permission to be excused. That signaled the absolute end of my composure, as he had just provided proof enough that he was ready to exit this madness. I managed to get two more morphine doses into his mouth during the afternoon despite his lack of cooperation, but the thought that he was wanting out was simply unbearable.
This assignment would not be over a moment too soon.
Our assignment – the active duty phase, anyway – ended the following night after a marathon of morphine and suctioning to keep Jeffrey as comfortable as possible. A mere two breaths after I finally thought to tell our little warrior it was okay for him to go play with the angels, he did.
I have tried to put myself in others’ shoes when it comes to these tough life assignments, and I remain thankful for the one(s) doled out to us. While I haven’t volunteered for another round of SMA, I can’t bring myself to even ponder assignments of suicide, drugs, seriously miscreant behavior, missing/murdered children, and other nightmarish genetic conditions… like EB.
Nor can I imagine what it’s like to lose your first – and many times, only – baby, especially when the death comes at the hand of a genetic glitch. Then what?
If you believe that God makes no mistakes, then it’s no surprise that Courtney was the perfect mama for Tripp. I doubt she insisted that she be given a baby with such a devastating condition, but she accepted her assignment with grace and gratitude. Her reward was being blessed with a perfect, loving little soul whose zest for life included a particular fondness for Elmo and drums. And the other challenges hurled her way? Nothing got in the way of her focus on her baby’s mind-boggling needs. Nothing.
Thanks to Courtney and a caring community (online and in real life), Tripp’s story has been shared around the world. Literally. The outpouring of prayers and support since Saturday has been phenomenal, and while it won’t keep Courtney from the depths of grief, it will help that so many loved her little guy, in awe of her unwavering faith that God was in charge.
And He is. Thank God.
If you haven’t taken time to visit Courtney’s blog, “EB”ing a Mommy, please do, especially when you feel battered for some reason. You won’t stay down after reading, and you’ll come away with an appreciation for your own troubles.
Sending big hugs and prayers to Courtney and her family and enjoying visions of Jeffrey’s teaching Tripp how to send signs to his beloved mama 
Lucy
CourtneyandTripp Roth (Facebook)
For information about the THIRD annual Jonah’s EB Auction (Feb 24 – 27, 2012) – Jonah’s EB Auction and Jonah’s EB Auction (Facebook).
Designed by Andrea Huth Ness; drawing by Holly Stokes
Whew. After pushing my brain and eyeballs beyond the point of no return with tax fun, I decided to take a break and update with a few fun thnippets.
Alas, there are a few thnippets, but not all are fun. I’ll hurry in case the predicted wind zaps our power, which will really be exciting. Not.
Let’s start with the upbeat thnippets:
1. Thanks to a lot of determined folks, MJ managed to leave the previous one-day ecard record in the dust! Instead of the desired 1066 cards (to beat the record by a measly one), she received 3676 cards! And real cards! And presents! And the best present is that she seems to feel a tiny bit better. Those of us in the MJ Fan Club will take it If you participated in the Drop-Everything-And-Send-Cards-To-MJ experience, thank you!!! She’s now passed Day 100 in the hospital but feels the love.
MJ and a sampling of her cards
2. Today is the 38th anniversary of Randy’s marriage proposal. When I emailed him this morning that I’d just noticed the date (and happy anniversary!), he asked how I remembered. I could have asked how he’d forgotten, but since he does a pretty good job remembering everything else, I’m giving him a pass. In related news, January 7 was the anniversary of my folks’ first date, and tomorrow is the anniversary of Favorite Daughter and Favorite Son-in-Law’s engagement!
3. Speaking of plumbing, the water pressure in our old farmhouse – or lack of it – is currently challenging our sanity. Thinking that maybe the faucets were clogged up with the stuff country faucets get clogged up with, Randy removed the hot water handle at the kitchen sink. WHOOSH! The water pressure was instantly impressive, straight up to the ceiling and all over everything around. He managed to stop the spewing and replace the handle (after finding no expected ‘stuff’), only to watch it drip. And drip. And drip. Two days later, I happened to find a tiny spring in the sink, just barely too big to slip through to Never Never Land. Miraculously, it was the drip-stopper.
We still have pitiful water pressure, tho, so on to brilliant Plan B… as soon as we think of one.
4. TWO – count ‘em – TWO moms of SMA angels are pregnant again after long, frustrating waits, and at least one knows her baby is SMA-free! What a great way to start the new year.
5. The final thnippet concerns Tripp, the incredibly resilient little guy with EB (Epidermolysis Bullosa). After a mind-boggling demonstration of courage and joy in the midst of excruciating pain, Tripp’s earthly days are apparently coming to a close. While his amazing mama, Courtney, seems as ready as a mama could be to watch her precious baby don his wings, please include them in your prayers for the upcoming stretch of their journey. It ain’t easy. Here’s Courtney’s blog post from earlier today.
Lucy
The volunteers at Nationwide Children’s Hospital (where MJ and Brenda have been held captive for over 3 months this time) are ready for the ecard record-setter for MJ… they’re even printing this weekend to keep up with the expected flood and will present them all to MJ on Monday. They are as excited as the SMA family to hand over a record number of ecards – 1066, to be exact, but who’s counting?
Brenda, MJ, and the volunteers, that’s who!
This is from Brenda:
I have gotten a phone call today from volunteer services. This is BIG NEWS!! The marketing department is ready for the weekend, so, according to them, “BRING IT ON!!!” They are ready for you. They are ready to have the record be broken! The volunteer is so excited and encouraged me to keep spreading the news!!! The printers are up, they have the paper and the printer ink. They want to know what MJ fans are made of….pretty funny that the hospital is daring you all to break the record. According to the hospital, there have already been about 300 that have showed up…someone will be printing tomorrow and Sunday during the day and a volunteer is set up for Monday to make the delivery and extra help will arrive to finish sorting and count the cards. Keep them coming everyone and let everyone know how we are doing!
Please help MJ break the record; knowing how much she is loved will surely help with her healing!!! The ecards are free and easy, and you can send as many as you want!
And please pass this on however you can!
1. Go here to get started in this free and EASY process.
2. The ONLY info you need for the ecards:
Patient: MJ Purk
Room: T5121
Let’s not disappoint MJ or the volunteers! We’ll update as soon as we hear the number of cards.
Thank you for being a part of this very special project and for showing the volunteers what MJ fans are made of
Ready, set, SEND!
Lucy & Ethel
We’ve written about MJ ‘Queen’ (fitting nickname given to her by SMA children) many times before, but we’ve been spinning in our own circles so long, we haven’t updated lately. Or written about much of anything else, for that matter. Some day we’ll dust off the Suite on a more regular basis!
Meanwhile….
MJ, diagnosed as a ‘Super 1′ in the world of SMA, and her incredible caretaker/sidekick, Brenda, have enhanced the lives of everyone they meet with their absolute refusal to let SMA bog them down. MJ has made countless video tributes of SMA children and angels, and she and Brenda are quick to welcome newly-diagnosed families. MJ exudes optimism, joy, and a genuine appreciation for life… a welcomed antidote for the fear the typical impersonal doomsday diagnosis experience provides.
Their big joint project is Blankets for SMA (B4SMA), in which they send handmade blankets to SMA children; they’ve sent over 900! Lucy’s mother-in-law, Nell, has made some blankets for the project when she was able.
Those of us bound together by SMA absolutely love MJ and Brenda, but their impact is by no means limited to the SMA family.
MJ and Brenda on a rare escape from the hospital in August
MJ has spent the greater part of more than a year in the hospital for one complicated situation after another. The last admittance was almost guaranteed to be a short stay, tolerated as a mere inconvenience. That was three months ago. It has been joked – sorta – that MJ warrants her own medical journal, as she has baffled literally every medical human who has attempted to fix her. If one body part or function is somehow tricked into behaving, another rebels. And so on and so on and so on. Her slacker gall bladder was removed recently, and to say that didn’t go smoothly is an understatement.
She’ll definitely be stuck in the hospital – in all ways – for her 24th birthday, and it looks like another surgical procedure is in order.
Meanwhile, MJ continues spreading joy to everyone around, so we’re joining the effort to spread some joy right back to her.
While the best present would be a trip HOME, MJ would be (almost) equally thrilled with cards, so here we are once again with the Ecard for Dummies info!
Ecards are EASY and free, and you can send as many as you’d like!
1. Go here.
2. Follow the EASY instructions, which include an option to download your own photo or choose from a variety of illustrations (many are cute).
3. Patient info: MJ Purk, Room T5121 (do not worry about a forwarding address).
4. Done! Repeat often!
If you’d like to mail a card:
Nationwide Children’s Hospital
c/o MJ Purk
700 Children’s Dr. 5 Tower Room #5121
Columbus, OH 43205
MJ particularly loves cards and drawings by children and photos of them, too (that’s easy to do on the ecard!). She also loves anything vanilla and peppermint, and silly stuff, like crazy shoelaces and mismatched socks. Gift cards (Amazon, where she gets her music, and Visa) would be most welcomed, too.
And prayers – lots of them – for MJ, Brenda, and those in the medical profession expected to find a way to get her better and outta there.
Some of her silly socks. She does wear them on her feet, too!
Don’t worry if you can’t get something to MJ by Sunday. We think she’s earned a birthday month!
Thank you for sharing this quest to provide a very special young lady with a day to remember. Feel free to pass it along as you can!
Lucy & Ethel
