I don’t have a title for this one

At the hospital, we wait to see Rhema’s neurologist.

On this particular day he’s moved his office to the Orthopedic floor. It’s a hard, hard floor. To see little bodies broken, wounded, palsied and withered. The waiting room is bursting at the seams and children are crying. A team of medical workers rush by us, pushing a hospital bed. There’s a baby. In a carseat, on the bed. And the baby is covered with a hospital sheet. The parents follow quickly behind, fear etched on their faces. Oh Lord, I pray.

I don’t understand why children suffer. I don’t. But I believe He bottles tears, and one great day there will be an end to the pain in this hurting world.

Brandon murmurs, “If you ever need some perspective, a lesson in thankfulness, come to Children’s Hospital. That’s what I need to do, just come and sit here for a day.”

It’s exactly what God has been speaking to my heart. This book has challenged me to take a good, hard look at my grumbling, my self-absorbed-ness, the ingratitude of my heart. And to write down continuously the gifts God gives, to document the ways He loves me personally in a day.

Finally Dr. C calls us back. We walk into his office, and I notice my racing pulse, an old Rich Mullins song in my head: ‘So hold me, Jesus. ‘Cuz I’m shaking like a leaf.’ Oh, we’ve been here, done this. We’ve sat in the doctor’s office and received bad, shocking news before. This go-round, we already have a strong suspicion the EEG is not favorable.

But ask any mother in that waiting room, no matter how many times you come back to this place, it never gets easier. And discussions like these, with a doctor, about your child, the one you held in your womb and under your heart for nine months and now love everyday with a crazy mother-love – it alters you on some level and you never see the world the same again. No matter how many times you put on a brave face and calm smile and talk about the options, your mama’s heart still breaks. You still feel like you could lose it on the spot and curl up in a corner somewhere.

Last November, tests showed Rhema’s brain was spiking 40 times a minute. Today we learn her brain is spiking 58 times a minute. I cannot believe it. I’ve seen the graphs with the spikes and waves, the images of her brain. But I seriously don’t understand. I cannot wrap my head around 58 times a minute. “Is her brain gonna fry???”

We talk about trying meds that you can’t get in the US. We get a second opinion from one of the best epilepsy doctors at Children’s. He urges us to try high dose steroid therapy even though there are nasty side effects (like weight gain, high blood pressure, stunted growth, behavior changes, gastro problems, immune system suppression) and it may not even work. (My first response is Thanks, but no way, dude. But I am so desperate to help my child, and I just wish I knew how to do that).

We leave with a 3-month plan to wean her off the current med, and a 3-month plan to think and pray.

(Oh, and then there’s a Rhema-accident at home that involves 4 firemen and 2 paramedics… but that’s another blog.)

I endeavor to take the good days and the hard days with thanks.

I record how I’ve been blessed today with: 

~One giant blueberry pancake

~Perspective in the waiting room.

~Rhema’s toothless grin

~Her brain is not a mystery to God, her deepest parts known by Him, and every wild hair is counted

~Brandon’s forgiveness

~Carrie texting me a picture of herself with a margarita, “dear sister, when troubles come your way, consider it an opportunity for great joy.”

~Hope wanting to know what’s so gross about the gross motor room at school.

~My Bible study sisters praying for wisdom in our decision-making

~Walking out of that hospital, my girls happy and well at home

~My dear group of mama friends – determined to help me know I’m not alone – sending love and prayers all day

Thank you, Lord!

It’s true.

Just being simply thankful, truly thankful, isn’t changing the circumstance, but it’s changing me. 

I find myself bumping into peace. Even joy.

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41 thoughts on “I don’t have a title for this one

  1. This is SO good. I SO need to remember this, as I have a tendency towards grumbling, pessimism, discouragement, and ungratefulness. Thank you for this. I am praying for you all!

  2. I really need to get that book. I have seen so many people on different blogs recommend it.

    I am praying for complete and total healing for Rhema’s brain spikes. I am praying that in 3 months there won’t be any need for the new meds.

    • Beth, the book is challenging and there are some things I’m not sure I agree with. But the overall message is powerful.

  3. Aww Jeneil, I am hoping and praying that the next 3 months bring a good resolution. You know I’m only a car ride or a phone call away.

    I wish so much for peace for you and your family. You are so deserving of it.

    Love you,

    Jersey

  4. 58 spikes a minute.. that’s hard to wrap your mind around. As a Grammie of a 5 year old that’s experienced seizures for several years, my heart goes out to you and Rhema. Right now we are having a reprieve from symptoms, we pray that you will soon too. Sometimes it is so hard to wait for God’s timing to answer our prayers and to accept the way he choses to answer them. Your heart is in the right place…I need to read that book too ladies.

  5. Jeneil, the advent of you (and your family) in my life is a gift. You teach me about faith and patience every time you write. You remind me that there is much that is good in this life despite how difficult the journey can be. You inspire me. You touch my heart.

    Wishing success in treating the spikes and waves of sweet Rhema’s active brain with as few ill effects as possible. And holding you all in my heart.

  6. Praying for you as you make decisions about Rhema’s meds/care. Your strength, peace and thankfulness in the midst of such trials is such a sweet testimony of the Lord’s work in your life.
    (I love that Rich Mullins song too…)

  7. Mahi Mahi, I have often needed to take some prespective and see the good and God around me and my little one. If I work really hard at it, during those really dark moments, I do remember that she is but a precious package that I have been given to carry through this life as best I can – but He is the One truly responsible and Yes, Mahi Mahi, He knows every hair on her head and every thought, every heartbeat. I am not here to ‘save her’ or ‘fix her’ – I am here to be touched and molded by her in His eyes.

    Love you, Mahi Mahi.

  8. WOW. 58 times a minute. I can’t fathom that. I just… can’t.
    We are here for you. You don’t even know “us” or “me.” But I am here.
    Thank you for sharing your blessings with us. I’m honored.
    I’ll also be praying hard.

  9. Jeneil, I too am so in awe of you. Your grace and faith is truly amazing to me, and a gift because it makes me think and give me such perspective each and every time I write with you or read what you’ve wrote. Your family, Brandon, Rhema, Hope and you, are all in my thoughts and prayers. xoxo

  10. It’s hard to write with these tears in my eyes. You never cease to amaze me with your strength and your faith and your ability to see the good in everything.
    I have been at Children’s in that wing…and thought the same thing as you did.
    Your dear family is in my thoughts and prayers as you take this next step. Here for you always.

  11. You are an amazing woman. I feel so lucky to have found you in this giant world. Your words are beautiful. I just wish things were easier for you and your family. You have all of my love.

  12. I met Rhema, Hope, and you back when my son, Jared, was 4yrs old and in preschool at Cove…… we both attended Gretchen Kirby’s support group meetings. I recently became aware of your blogs and enjoy reading them so much. Please add me to your your distribution list!

  13. There are no words apart from- I am sending prayers. I am especially sending ‘calm down, little brain! be chill!’ prayers.

  14. Jeneil, I’ve read this book and it really does force you to take a hard look at your heart. I’ve been struggling to do as she suggests and keep a gratefullness journal. I find myself looking for the big stuff instead of the everyday gifts of which there are so many. It’s nice to see someone else (besides the author) doing it. It’s given me hope that I CAN do it. I just have to keep trying and keep asking Him to help me.
    Natalie

  15. When a mutual friend asked me about you the other day, I found myself saying simply, ‘she is my hero’.

    You have taught me – and all of us who are blessed to walk with you – so much about faith, gratitude, patience and love. You’ve so gently showed us our own failings and frailties and guided us toward a higher plane.

    I’m so sorry – so incredibly sorry that the path isn’t easier for your beautiful Rhema, for you. But neither of you will never walk it alone.

    I love you, my friend.

  16. Oh my gosh, hugs to you and your beautiful girl. The path is never easy but you walk it with such grace. You teach me a thing or two–honestly.

  17. God made you a remarkable woman and is using you in tremendous ways. He is also using Rhema as wel. What a blessing you are to the medical teams and teachers that get to encounter such a setapart family. You are the salt. Remember all of those sweet babies your prayed over during your time in Ethiopia? They have felt the touch of the Master’s Hand thru you as do all of us and those in your sphere. You are doing amazing work in God’s kingdom, thanks for reminding us today to grasp onto the “blueberry pancakes” of our day. BIG HUGS and continued Prayers for you all. Loves!

  18. elaine@peaceforthejourney sent me your way. She said we could relate with one another and sister, she was right. It’s my first visit to your blog but your stories takes me back to my own sad, painful, and rather foggy years of grief and acceptance. I will bookmark your site and look forward to seeing you again soon.

    Feel free to visit me at: http://oliveleafministries.blogspot.com/

    Blessings sweet mama.
    Nancy Douglas

  19. 58 Times. That’s, unthinkable. I have heard of over 100 times in a minute. I pray Rhema’s “numbers” don’t go there. Now… I don’t know if you recall, but Rhema and my J are both diagnosed with the same epileptic condition (LKS). We are using the meds you can’t get in the US. PLEASE contact me personally about it. (specialhappens at gmail dot com). As for steriods, J isn’t a good candidate for them because his immune system in compromised already. We’re looking at IVIG if the clobazam isn’t doing what it should…though we think the numbers are better, we have noticed recent regressions…. our need EMU EEG is in June. We’ll know more then.

    Regardless, please contact me about the out of the US med, etc. Thinking of you always.

    Gina.

  20. Pingback: For good « Autism In a Word

  21. Pingback: Autism, epilepsy and song « Autism In a Word

  22. Pingback: EEG time « Autism In a Word

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