Two Years In!

DSCF2482On the offshoot chance that anyone still checks to see if this blog has been updated, and on the cusp of Pearl’s second birthday, I thought it a fitting time to post an update.

I’ll start by saying that by all accounts, Pearl is doing better than she ever has! Take that sentence with a grain of salt though, lest you have images of her doing long division, dissecting frogs, or quoting Socrates. Her better is still quite far from the norm, but I suppose she quotes Socrates as well as other kids her age. Her seizures have for the most part, been fairly under control lately and she hasn’t had a visit to the hospital in many months. Though she required oxygen intervention for most of the winter and spring, today she is breathing well on her own, and we don’t really monitor her oxygen except at night when she’s sleeping. She also got her first wheelchair earlier this year and that, along with not needing to carry oxygen and monitors allowed us all to get out a good bit last spring. The summer heat and humidity is bearing down on all of Nashville at this point and since Pearl doesn’t regulate her body temperature very well, we’re back to hanging indoors again… at least for now.

It also seems that she may be going through a bit of a developmental growth spurt, but maybe I’m being ignorantly optimistic. Though there’s really no way to be sure, there have been many times where it seems her sense of awareness is sharpening. If she is aware, she still isn’t able to really engage, but simple things like consoling her have become easier. And maybe we want it to be the case so much that we believe something not true, but it does seem that she is starting to do some combination of hearing and/or seeing! Again, that might not be the case at all, but often when we hold her, she actually seems to be making eye contact. Her therapists have mentioned that it’s common for kids her age to hit a development stride, so that’s not out of the question.

There was a recent bill signed here in Tennessee, which will allow for a 4-year study on the effectiveness of cannabis oil (medical marijuana) in treating epilepsy. In case you’re wondering, it’s just an oil that we could administer through her feeding tube. There would be no black light Bob Marley posters involved in administering this medication. We’ve really been hoping something like this would come along in Tennessee, because we’ve heard countless stories of kids in other states who were having 300-400 seizures a day being able to come off of seizure medications altogether and still only have a small handful of seizures a week! It’s really difficult to know a ton about Pearl’s development because she is on so many extremely potent seizure medications. We’re really hoping to get her in on this study to see if she, too, could come off of these drugs that have such harsh side effects and onto something that could be easier on her body. Yes, I realize there are differing viewpoints on medical marijuana but whatever your perspective, God’s modus operandi always seems to be taking that which we have abused, throwing a bit of redemption in the mix, and making it blossom! As of her last neurologist appointment, there is no news of the study getting underway. Hopefully, we will know something soon. Honestly, I’m a bit concerned that the politics and economics surrounding the pharmaceutical industry may hinder the research in TN before it gets far enough along to benefit Pearl, but since moving to a new state isn’t really in the cards for us, we’re hoping it’ll come together soon.

DSCF4137The older kids are doing really well, too. Brennan started homeschooling last fall, and now that Abbey is done with her preschool program, she’ll be joining him at the coffee table this year to begin her schooling as well. They both really excel at school, and seem to enjoy being able to do it at home. If left to their own devices, I suspect Brennan would spend his school days reading books and Abbey working on art projects (also known as coloring books). They’ve both grown so much in the last couple of years. It’s crazy to think that Pearl is almost the same age that Abbey was when we first received her diagnosis.

They’re all so blessed to have each other as siblings. Pearl couldn’t ask for more gentle and loving siblings, and they couldn’t have asked for a younger sister who could’ve taught them in the way that she has. Brennan still walks in the living room everyone morning and trumps, “Good morning, Pearl,” in a way that makes you wonder if he’s still expecting she’ll return the greeting. It all comes together to create a really beautiful dynamic in our home. Ruth and I cut eyes and grin at each other many times a day, making sure that the other is privy to the sweetness that is our living room. Though we weren’t really sure how it was going to pan out when we included them in so many hard discussions early on in Pearl’s diagnosis, I’m really grateful we did. I think so much of how they view life today has to do with how much they understand and process suffering and difficulty in light of God’s goodness. He’s been so good to us in this realm.

And I still don’t know how Ruth manages to continue juggling everything on her plate. She’s always a bright light and brings so much levity to our home, all the while somehow keeping the whole machine operating. Between caring for the kids, homeschooling, and managing the ecosystem that keeps The Good Ship Pearl afloat, she’s got her hands full. Trying to navigate the waters of in-home health care and equipment providers is enough to make the sanest of folks lose their mind, but we’ve both started finding ways to catch our breath more than we used to.

Many of our friends have faded from our lives over the last year, and a few new friends have come along side of us as of late. I think probably we all were prepared for a really quick, really rich, and really meaningful life with Pearl. None of us wanted to miss a moment when we thought the moments would be so few and yet, none of us were prepared for the long haul that we prayed for! Sometimes it gets overwhelming, and sometimes we all get exhausted with heavy conversations. It’s quite understandable that people can only be so heavily involved for so many months and we’re grateful for the fresh wind that new friends have brought into our lives. And maybe we’ve learned not to make every conversation about living in HeavyTown, too.

DSCF1329-2Yes, I realize I don’t write much anymore. If you’re itching for more frequent updates or photos, I do still use Twitter. If you’re not on Twitter, but still want to take a peak at more recent photos, you can still click over to twitter.com/ebrown_photo. There was a season when I had a great deal to share and a great deal of time to share it in, but these days I seem to be filling that time working or looking for work, and there’s not really much new to share. We don’t really have too many emergencies, and though we still celebrate Cupcake Friday, we don’t still sit around slack-jawed, watching the calendar fill up with red x’s. We’ve very much settled into a way of life. It’s a somewhat mundane way of life that is substantially different than most families, but we’ve learned to love it and do it fairly well.

So far this year, I’ve travelled for only about 3 weeks. Aside from that, I’ve somehow been able to squeeze out a living with photography here in Nashville. Many months we’re scratching our heads wondering if we’ll pull it off, but during this season of life, it seems to be the best decision if it means I’m around and able to help at home. I may end up trying to track down a fall tour though, as photography seems to have slowed beyond a sustainable threshold this summer.

Last year on Pearl’s first birthday, it seemed quite fitting to invite our entire community to a big celebration. This year it seems quite fitting to slip out of town with just the 5 of us, and spend a night away at a water park. It’ll do the older kids good to cut loose for a day or two, get sunburned, rent a hotel movie, and maybe even eat hotel waffles! We’re all really looking forward to it, and grateful for the gifts that have made it possible for us to go. It should be a great time!

I don’t know when I’ll write here again, but as always, thanks for checking in… Sorry it’s been so long.

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44 thoughts on “Two Years In!

  1. Thank you for sharing. I often think of your family and lift you up in prayer. I can’t imagine the strength it takes to have the positive attitude you all have. You have blessed me today on a day when I needed it, so I thank you for that as well. All 3 of your kids are beautiful.

  2. I am SO glad you found the time to update. I am still praying for you guys and have been wondering for quite some time how life was going, how Pearl was doing, how the big kids were adjusting and just basically everything that you wrote about it. I have been following y’alls story since the beginning and am always praying for blessings for you guys. Glad life is going well and that you have not had to travel too much!

  3. Glad to hear from you. I have been wondering the last several weeks how things are going for you guys. You guys are not in this alone…

    • What a nice surprise to hear how your family is doing. Pearl is a precious little girl and so blessed to have you too.

  4. Glad to hear Pearl is doing well as well as the rest of your family. She is beautiful and I love her hair! Loved the pictures! Your writing is wonderful I can really feel your love for your family and God’s love shining through.

  5. Hey, Browns! I was JUST wondering when you would post again. I told Ruth forever ago we needed to get the kids together again an catch up and meant it, but I’ve been busy and lazy, so I dropped the ball. Summer is flying by! It’s still gonna happen. Glad to see you’ve found a family groove : )

  6. Thanks so much for the update! Know this a roller coaster life for you all, but your witness has stayed intact. LOVE the pics! PJ’s blue eyes & red hair!!!❤️❤️ We continue intervening on your behalf.

  7. I had just this week checked in and found your twitter page to catch up so I was delighted to see the memo line for the update today! Isn’t God’s faithfulness AMAZING! Totally amazing!

  8. Dear Eric and Family, I think of you often and pray for you often. There was a time when Baby Pearl didn’t enter my train of thought for a while and then all of a sudden, I find myself praying for her and hoping she is doing well. I am sure there are many others like myself that don’t personally know you, but hold you and your family in their prayers and appreciate you letting us into your lives by sharing your updates about your precious gift from God. And who also appreciate your family’s true love and dependence on our Savior. After all, He is all. Thank you for the update and know that there are many who pray for your good health and peace. With the love of Jesus, Vicki Ashwood

  9. I’ve been reading about Pearl from the time you started posting. I am still here and will continue to be. She is an inspiration to so many. She’s lovely. You write so beautifully. Please consider writing a book. Karla Miller

    Sent from my i Phone 5

    >

  10. I’m so happy to hear from your family! It’s truly a blessing from God how far Pearl has come! Everyday life to each of us is so different. Some days must seem very long to you all still. But what a joy it is to see pictures and read about those days! Prayers continue for all five of you. Have a wonderful time a the water park!

  11. I realize I’m just a @ on Twitter, but I do look forward to Fridays, & watching your children grow. You are right about them. Pearl could not have found a better brother & sister had she phoned ahead. And you two are raising some mighty compassionate little people, who will head out into the world one day & spread that joy & compassion. You are all to be congratulated! Happy Birthday Pearl Joy! Blessings abound for you all!

  12. I was just thinking about Pearl last night & the fact that I hadn’t seen an update lately. Thank you for sharing your experiences with us. I pray for your family often.

  13. So happy to hear about your beautiful little family and how things are going. Please do keep us posted as you are truly a shining light in this world.

  14. Thank you for this update. I too was wondering how Pearl was doing. So happy to hear that her health has stabilized as much as it has. God is GOOD!! Happy birthday to the birthday girl! And God’s blessings to all of you. Norma in MN

  15. Thank you for checking in. I am glad that life seems somewhat “normal” …at least YOUR normal. Happy Birthday to Pearl and Blessings to you all

  16. Ty so much for the update. I was thinking of you guys only yesterday !! Have a wonderful mini vacation and know that you are in our thoughts.
    We love your family!!

  17. Thank you for the update. I love reading about Pearl. I have 2 redheaded little girls myself (well…not so little…16 and 13). Your Pearl is beautiful. So are your other children, but I’m partial to redheads. 🙂

  18. What a relief to hear that you guys are okay! You probably have no idea how you’re blessing all of OUR lives with your courage and compassion—and faith. We’re praying for you!!

  19. Thank you so much for sharing, you will never know how many lives you have touched with your story! Happy 2nd birthday to Pearl and wishes for a great getaway weekend!

    Sent from Windows Mail

  20. Thank you so much for the update! Your family is amazing and although this blog started out to share updates of Pearl, I am always so glad that you include the rest of the family as well!! Keep up the good work and remember we continue to keep all of you in our prayers!!

  21. So happy to read this update! You are all in our thoughts and prayers. I have to tell you the God given strength and peace you all have had in your journey with Pearl really touched my heart. I recently, March 23, gave birth to my sweet angel at 29 weeks. God gave us 55 minutes with him before he was called home to Jesus’s arms. When we found out at 20 weeks that he had a “poor prognosis” and wouldn’t live outside my body. We took a page from your story and decided to allow God to work through us. Through our baby. And boy did He ever. Thank you for your example of strength and faith and for sharing Pearls story. God is so good! I pray His blessing poor down on you abundantly! Love in Christ

    • Angie,
      I pray that God continues to heal your heart. He does such amazing things through the hardest of circumstances, and I pray that your family will continue to feel His blessings. I am sure it feels like you can hardly wait to hold little Aavyn in your arms again in Heaven. I know my relationship with Pearl will be different in heaven and I often daydream about her being seizure-free, playing and smiling in heaven.
      People often comment about strength, courage, or faith – they are all gifts from God but often falter when we look to ourselves.
      I pray His peace for you,
      ~ Ruth.

  22. God bless you, Pearl Joy and Family. Keep up the good fight. And yes, we are still checking for updates. Thank you, Daddy.

    Sent from my iPhone

    >

  23. Wow what can I say? I am so thrilled that Precious Pearl is still enjoying in her way family. It is lovely that family life is progressing in a forwards direction. Only God Knows why he chose you to be blessed with Pearl but from what I have read from the early days to the present day it seems as though you are living as a “. Normal “family . I pray that your family is blessed deeply as you have a few days together celebrating Pearls birthday . God Bless

    Tracy

    Sent from my iPad

    >

  24. Thank you for the update! I check every week. Glad Pearl is doing well. You and your family are always in my prayers!

  25. I just love reading your updates, Thank You!! You and Ruth and your precious family are such an encouragement!!! Blessings!!

  26. Thank you for updating us. Looking forward to the next good report. I keep Pearl’s picture on my desktop/computer to remind me to pray for her. Still hoping and praying for the best for Pearl and the rest of her family. God bless you all.

  27. Thank you so much for the update. I am so glad to hear the Pearl is hanging in there, and even doing somewhat better! Your family is just beautiful. You will be in my prayers.

  28. How timely your update….I was wondering about Pearl the other day and have assumed that no news was good news and glad that this is so! Thank you for sharing!

  29. I am grateful for your update. I too, believed and hoped that no news was good news. God knew what He was doing when He chose you for Pearl Joy’s parents. Thank you for heeding the call. You are part of what is still right in America. I thank God for you and pray that He will continue to bless your family with His love, joy, peace, patience, kindness, goodness, gentleness, meekness and self-control. Thank you!

  30. So happy to see your update. I check often and wonder how Pearl and your family is doing. Thank you for modeling blind faith for me. I pray for your family often.

  31. Good to read this update, Eric. We too think about you guys often and try to lift your beautiful family up in prayer.

  32. Thank you for your newsletter/update on sweet Pearl and your precious family. My prayers are with you. Blessings to you all.

    Leigh Ann Riley

    Date: Thu, 17 Jul 2014 21:09:39 +0000 To: leighann1957@msn.com

  33. I’m so happy I found your page 2 weeks ago. My sister had my sweet baby niece and had Absolutely no clue what she would learn about her baby just 24 hours later. She was diagnosed with holoprosencephaly semi lobar. So of coarse I was trying to read up on as much as I could about this and I came across your website. Our baby violet looks a lot like your beautiful pearl!! She’s doing pretty good, keeping her temperature just right is a daily struggle and her seizures are hard to see her go through. But she is happy and thriving and the most beautiful baby ever. Thank you for updating about pearl. It gives us hope!! God bless your family!

  34. ERIC…. I love this family so much and it warms my heart to read your words….I miss b and abbey everyday and think of your family often. Always good to hear updates and stay in the loop…. Ruth has my number and if she ever needs anything please let her know I am just a phone call away. YOU all are such a blessing!

  35. Still praying in Little Rock. Thank you for continuing to share the journey that inspires the ‘rest of the family’.

  36. Well, I’m a little late to the party, but I was thinking about you all and wanted to see how everyone was doing. I’m glad for the good news and hope there’s another update soon with even more!

  37. Contact a doctor in Jackson, Ms. His name is Michael Friel and he is at University of Mississippi Medical Center. He did surgery on my grandson for his pallette. He is one of the best in the nation. She is beautiful. The surgery he’s with breathing.

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