It’s Been Awhile…

ImageSorry, everyone. It’s been entirely too long since I’ve written here. Perhaps there hasn’t been too much in the way of pendulum swings that have merited me sitting down to write. I suppose we’ve also gotten tired of telling everyone the same update, all the time:  life is hard, Pearl is fighting, God is good, and a year and a half in and we’re still quasi-hanging on as God continues to sanctify us through this incredible story he has written. To say that we always see it as an incredible story would be a lie, though.

I feel like I can speak for Ruth in saying that we’ve grown somewhat tired of feeling like we sound like some whiney, broken record of Debby-Downer-isms. As of late it feels easier to throw on our game faces when asked how we’re all doing. There’s often not time to tell the whole truth, and if we did, you’d probably wish you never asked! No one likes to be the person who brings drama into every conversation. Life at this point continues to be a constant struggle to stay afloat in all categories. You’d think we would be much more dialed in by now, but I’m not sure that ever happens, and I’m not sure that is what God set out to accomplish within us in the first place. But that’s that, and there’s no need to dwell there. Everyone has difficulties.

Pearl is honestly doing better than we ever imaged she would be doing at 17 months. Better still doesn’t mean great, though the fact that she is even doing at 17 months is miraculous, still! She caught a cold back in early November, which turned into a downward spiral, resulting in her being intubated for the first time. The doctors think she just got too tired of trying to breathe through the cold and had just given up. A few days of being on the ventilator though, and she was back off of it! After a couple of hospital stays, she’s still at home and for the most part, doesn’t need much oxygen intervention. In a way, it was good to get our first intubation under our belts. We’ve been advised since day one not to ever put her on a ventilator (except during surgeries) because kids like Pearl don’t come off of ventilators and all we’d be doing is delaying and complicating the inevitable. Well, next time won’t be as scary as the first time. Check.

I’ve read that kids with HPE get more complicated as they get older, and based on our experience and from observing other children with HPE, I can attest that this is true! She’s almost 30 lbs of not-very-muscular love at this point; so even diaper changes have become quite the exercise. She’s not able to support any part of her body so for lack of a better word, she kind of flops wherever she is moved. She does have a new bed and that has helped, and we are going next week to get her fitted for a wheelchair. If insurance approves it, that’ll be a huge help! I remember before she was born, seeing other parents pushing their kids around in special needs wheelchairs and I would fall to pieces. I felt quite certain that Pearl wouldn’t be born alive, and I would get so frustrated with God when I’d see those other families. “Can’t we just have that, God? You don’t have to take her life. Just give her that life! Why are you saying, no?” Man, I was a mess, but his silence at the time was brilliant. I don’t know if we would appreciate the life that she does have as much as we do, had we known all along that she was actually going to survive. He was patient, we were kids, and he was right to be silent.

I also had no idea what all was going on behind the scenes when I saw those families with wheelchairs out and about, either. I had no idea how much effort they put into grabbing fast food, going to the grocery store, or even smiling on some days. I didn’t realize that it wasn’t 24/7 warm fuzzies and prayers of thanksgiving. I had no idea that admission into the special needs club required me to check my childhood oblivion at the door, but that explains my respect for other families in this club. The camaraderie within the club is second to none, and dare I say necessary for survival. I’m so grateful to have other families that we can relate to on those levels, though I do wish we lived closer to them! We often feel like an island in a sea of typical families, but that is not true.

The rest of the family is doing okay, too. Brennan and Abbey’s love towards Pearl and each other continues to grow, and the ways in which they are able and willing to help continues to expand. Abbey even hooks her baby dolls up to imaginary feeding pumps! Brennan has been homeschooling at a kindergarten level this fall, and it looks like he’s ready to move on to first grade material this spring. He loves everything about it, and sweet Abbey tries her best to follow in his footsteps. One of the blessings of being so homebound is that the two of them have become inseparable. The downside of that is that they’ve really figured out their united front when it comes to defending their cases to Ruth and me! Even that is a little sweet to watch though, as they have learned to have each other’s backs in conflict. The dynamic between them is beautiful to be privy to.

And Ruth is still the glue holding us all together, and her laugh still reminds me that God is good in the midst of difficulty. In between caring for Pearl, homeschooling Brennan, and cooking sessions with Abbey, she has found moments to pull some sort of semblance of a festive environment to our home for the holidays. I’ve never seen someone who lays her life down for her family in the way that she does. Since Pearl’s last hospital stay, our church has reinstated a meal calendar for our family, and our in-home nursing has increased to 80 hours per week. That has really helped Ruth to find a moment to breathe, though having nurses in our tiny home for 80 hours a week feels a bit like being on the Truman Show, in that almost every aspect of our lives now involves a third party listening in! We are grateful for the help, nonetheless and we make sure to take advantage of the moments in between nursing shifts. And while I’m at it, thank you everyone who has brought a meal or sent a gift recently. Those efforts on your part really do take an edge off of the complexities of everything. At their least, those efforts break the monotony of being homebound, while reminding us that we aren’t going through this alone, and that is more valuable than you can imagine.

So yeah, I feel like I’m writing things you already knew about, which means that once again, I feel like I just wrote a Christmas letter. Sorry about that, but at least I didn’t print it and mail it to you. It’ll be just the five of us here for Christmas this year, as leaving town with Pearl is not at the top of the list of things we should do right now, and folks can’t always come to us. It’ll be a different sort of Christmas than the norm, but hey… last year Pearl was in the hospital and we had to Skype with Ruth while the kids opened their presents in the living room. And then we met her at the hospital for a Christmas feast in the Vanderbilt Cafeteria Subway. Needless to say, Brennan and Abbey thought it was awesome. And I imagine they’ll think this year is awesome, too. Either, way…Merry Christmas, everyone! Thanks for still taking time to read. Sorry again, for not updating this as much as I used to. Thank you for understanding.

34 thoughts on “It’s Been Awhile…

  1. Thank you for updating, even if you didn’t feel like you had anything to say. I was missing a post on your sweet daughter but was afraid that maybe the Lord had called her home and you were dealing with all that.
    I have a daughter who takes in special, medically fragile, kids that the state has taken from their homes. She has had many struggles in getting the nursing help she needed for the first little angel (she wasn’t sleeping but an hour here and there until CPS finally got it together! She was 6 months without night nursing help!), and has had to learn how to juggle wheel chairs, respirators, feeding tubes, all that. But she did it – we ALL did, as we are a close family. No, it isn’t 24 hrs of warm fuzzies and no it isn’t easy. But it IS worth it when you get a smile from a child with no brain activity but they somehow manage that.(a small miracle!). And to have them, no matter how big, snuggle into you when you hold them. She was blessed to be able to adopt her second foster child and what a blessing and miracle SHE is as she learns to walk with a walker – she’s 2 now, is giving her transportation really a good idea?!?! 🙂 and the first angel is back with her mom and both are doing well! She now has another brain damaged little one to snuggle and love and care for until things work out for him. We are ALL so blessed with these sweet spirits in our family. YOUR family is blessed with Pearl’s. And those of us who have special needs, medically fragile little ones in our lives, love to know that your life is going OK with YOUR ‘new normal’.
    Please know that there are many prayers for your miracle.

    • Marlene,
      Thank you for sharing your experience as well. I’m glad your daughter is receiving more support now. Every meal, every nurse shift, every random gift is a breath of fresh air in our house. Our life is full of both blessings and difficulties. Our “normal” changes almost weekly, and God sustains us through it all. Thanks for joining in our journey. Thanks for caring and for praying.
      ~ Ruth.

  2. Thank you so much for the update. Don’t even worry about sounding whiney! You are being real, and you are also honest about the joys in your lives. Pearl is beautiful! I will be praying for your family to have the perseverance needed to continue on in your journey of faith.
    Blessings to you!

  3. As always, so wonderful to receive your Christmas update! I cannot say that I have thought of your family every day, but with Christmas approaching, I have been wondering how you, Ruth and the three kids were doing. Status quo is nit all you need always a bad thing. Knowing that God is supplying all that Pearl and you all need, makes us so very grateful to Him! May you all have a most joyful Christmas and a very blessed, happy, healthy New Year!

  4. What a truly amazing family the Browns are….they touch my heart on a daily bases…Eric you speak so well it always brings me to tears….B and Abbs are wonderful children and are blessed with wonderful parents….i am so lucky to know u all.

  5. Keep it up! She looks so pretty in her picture. What a big girl! Your downer entries are real life. We love you for being honest. You help others appreciate what we have. Wow 17 months is awesome. Have a wonderful, peaceful, Merry Christmas!

  6. I was just thinking of Pearl the other day and wondered how things were going. I continue to pray for your family. You guys are doing such a great job and are such an inspiration to a lot of us that are dealing with special needs of our own. God bless.

  7. Thank you so much for the update. I’ve been anxiously awaiting news, praying that no news was good news but afraid to inquire. Little Pearl and your family are always in my thoughts and prayers. I love the pic, what a sweetie! God bless you all and may you have a blessed and peaceful Merry Christmas!

  8. I know it seems like such a whiney thing, but taking care of a child of God is NEVER a whine! God knows how much we can take and how much we can give. You have given much to Pearl and admittedly she has given much to you. It’s not whining if you’re telling US what a chore things get to be! We aren’t there and we can only imagine (and that isn’t even right) what you are going thru. Just know God is with you and we, as hangers on to little Pearl, are praying for you and her and all your family. Take care, and God Bless you all. Hope your Christmas is good.

  9. Thanks for letting us know about your beautiful Pearl Joy- we really do care about her! She is beautiful and I pray your family has a very Merry Christmas and a healthy happy new year. God Bless!!

  10. I am sure I speak for everyone who follows this blog when I say that you never come across as whiny and I always look forward to your updates, even if they are the same as the previous update. Having been through the roller coaster ride that is having a child with HPE at home I can honestly say that I do understand how hard it is to slap that smile on your face because its easier that telling the truth. Billie-Jane was with us until she was almost 8 years old and those nappy changes were hard work! I wish you all a happy Christmas and I look forward to hearing more from you (when you can) in the new year. Sending you much love from the UK x

    • Thank you, Jules.
      It can be hard at times to figure out how to be honest about the difficulties and yet still grateful as well. Life is a roller coaster. And not just for HPE families. Like Eric mentioned, it seems we’ve passed through an age of innocence, where the brokenness of life seems pervasive. So we find things to be grateful for – like changing diapers and sibling love- and look forward to a day when all is made whole and right again. Thanks for reading and caring and sharing,
      ~ Ruth.

  11. Happy Christmas Eric, Ruth, Abbey, Brennan and Pearl Joy!

    Kudos Eric for keeping it real: the ‘I’m not complaining but….’ type of martyr has no place in my life. You have so much to fight against in your lives and in helping Pearl Joy fight for hers that it can only be wholly fatiguing and guy wrenching.

    I will keep all of you in my prayers, that there is a little more peace, a few more times to nod off onto deep dreamless sleep for you and Ruth, and that God provides you with enough financial support to meet your whole family’s needs and lift the strain of covering the very special needs Pearl Joy has.

    Many blessings.

  12. You forget that you are writing for an audience that already cares, already prays, and already knows, as best as anyone can know who doesn’t live it every day. There is no whining in truth. Apologies are not needed. Be blessed this Christmas and every day.

  13. The timing of your update couldn’t have been better—what a relief to hear that Pearl and your family are doing okay. I’m so sorry for the struggles that this has put you all through but please don’t worry about “whining”…it’s not! Your update is just real life. I hope you have a peaceful holiday.

  14. THIS is what Christmas is about. God. Love. Blessings. And even raw, honest emotions about not understanding His plan but trusting Him anyway. Thank you for your witness to so many. Thank you also for helping me pause in my own hectic life to focus my attention in the right place. On my knees. Praising God.

  15. Two thoughts … like another writer, with Christmas approaching, I was wondering where Pearl was in her journey. And like the writer who said you are writing to people who choose to come along for that journey, who care and pray for your family, a big AMEN. Thanks for sharing it all!

    The Pedens in Little Rock

  16. Eric,

    As a member of the club I wish I could find a way to express what you have said. It is hard to answer people’s questiyons completely without overwhelming them and feeling like a complainer. I find myself over using the words fine and good. Both words need a new definition added to the dictionary now.

    Your post was great. It is great to hear that Pearl was able to get the treatment she needed to boost her energy back to the point that she could fight through that cold even if the treatment meant a ride on the vent. That is one scary machine for parents who understand what its purpose is.

    I’m glad you guys were able to be together for Christmas and I hope you have a wonderful New Year! Praise God for the blessings you have!!!

    • Thanks, Hank!
      I find my most common answer is “we’re ok.” Life is hard; God is still in control.
      As scary as it is, the breathing tube was exactly what Pearl needed to give her lungs a break from working so hard, and also allowed deeper suctioning to get rid of some of the gunk that was too hard for her to cough up. I’m glad it only lasted 2 days and am not anxious to repeat it!
      Thanks for your support and encouragement!
      ~ Ruth.

  17. Thank you for taking time to update us. We are continuing to pray for Pearl and your family. God is good and He loves us all so much. Merry (belated) Christmas!!

  18. Thank you so much for updating!! I have checked for an update numerous times and wondered how she was doing. I think of Pearl often. Praying for your family.

  19. Eric, Thank you so much for taking the time to write. My heart is so full of deep love when I read about God’s leading and caring. You are so blessed with words. Our Lord is so faithful to meet us on all levels. Please tell Ruth I love her and I know exactly how precious she is to the people around her. What faithful servants you all are. Will continue to pray for you all. Love from Ronnie and Tina Bloecher, Grace Farms.

    • Thank you, Tina! Your encouragement and prayers mean a lot to me. You’re right – our Lord is faithful! I miss you and hope your family is well.
      Love you,
      ~ Ruth.

  20. Happy New Year! Eric we have been following your family since Pearl was just a few months old. It is a true miracle at what God can do! Our prayers are for you all. Amber Specht

  21. I am a lady who is pregnant being tol my son is got alobar holo. Hearing the things makes me so angry Vanderbilt has been great though no one can answer or understand what I feel beside the family of this angel pearl if there is any hope at all of talking to someone who knows please email me my email is name is Amanda I live near clarksville tn an am due 27 may if he makes it

  22. I was first introduced to sweet Pearl through Life.Edited and I love to stop by your blog and check on your family. I know you have so much going on, but would you and Ruth mind writing my name down and praying that I would have faith and joy in Jesus? Thank you.

  23. Dear Browns, I thought the following quote from a blog I follow might offer some comfort. It is from a sermon on the Transfiguration of our Lord.

    “The disciples thought the moment on the mountain was the greatest glory they would ever see. Only later would they realize it was but a prelude of the greater glory of the cross and resurrection. You and I are also tempted to think that glory is incompatible with suffering, struggle, and service. Where Christ is, there is the glory of God. Hidden in the sufferings and struggles of faith and life, Christ stands with us, that we might endure and be kept holy and blameless at the day of judgement. Assured of this glory, we go down the mountain, to live our baptismal lives in service to God and to our neighbor. . . until all is transfigured into the eternal lives of Christ’s promise in heaven forevermore. Amen.”

  24. Hi I am sorry that you feel you have to apologies for no update.Pearl is your very precious child from GOD , YES SHE HAS SPECIAL NEEDS BUT SUPPOSING SHE DID NOT HAVE THESE NEEDS you would not update daily , unless of course you were an avid blogger.
    Anyway as I write this Pearl is around 22months I hope life is going well and I look forward to hearing more
    God Bless

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