Eden and Seizures: An Update

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The cell phone had quit ringing, the visitors were gone, the lights were out, and I sat alone resting my head against my daughter’s hospital bed as she attempted to sleep with wires and tubes coming off nearly every part of her body.  The only sound was the steady beep of the heart rate monitor assuring me, despite the adrenaline pumping through my body with her every sudden movement, that she was not having another seizure.  I sat up, opened the Book of Common Prayer app on my  “smart” phone, and went straight to Compline.

The Lord Almighty grant us a peaceful night and a perfect end.

Amen.

O God, make speed to save us.

O Lord, make haste to help us.

So strange how ancient prayers designed to be general and usable by anyone at any time feel so appropriate… so perfectly particular.

Lord, hear our prayer;

And let our cry come to you.

Be our light in the darkness, O Lord, and in your great mercy defend us from all perils and dangers of this night; for the love of your only Son, our Savior Jesus Christ.  Amen.

Be present, O merciful God, and protect us through the hours of this night, so that we who are wearied by the changes and chances of this life may rest in your eternal changelessness; through Jesus Christ our Lord.  Amen.

The morning had started beautifully… Sun shining, fresh fruit, cinnamon toast, mama’s hugs and kisses, and Finding Nemo … about as good as it gets for a 22 month old little girl.  That little girl, our daughter Eden, was hanging on Jenny’s legs asking for a glass of water while I headed to the bedroom to take off my dress shirt…  Then her pleading stopped suddenly and strangely… enough for me to turn around to see what had happened.  I turned to see Eden’s body stiffen and then fall over.  Jenny cried out.  I ran over and scooped Eden up.  Her big, blue eyes looked at me with panic as her body arched, and then she stared at nothing, and then they rolled back in her head. Her body started shaking.  Jenny called 911.  She wasn’t breathing.  She turned grey.  Her body stiffened more.  She turned blue.  She wasn’t breathing.

She wasn’t breathing.

She wasn’t breathing.

After two minutes she went limp in my arms.  She wasn’t breathing.  She was blue.  And she wasn’t breathing.  I was on my knees weeping and begging her to breath.  And then she took a breath.

I would almost say that all the joy in heaven at the Resurrection would not have exceeded my joy at that moment.  It was what Tolkien would call a “Eucatastrophe…”  Something so good and wonderful that it makes up for all the bad.  But our day was just beginning.

The ambulance came and took Eden and I to Dell Children’s Hospital.  Jenny stayed with a very frightened Titus until our dear friend Evan arrived to bring them to the hospital as well.  The doctors came and told us that many children have seizures and that all would be well.   Sure, it was a little disconcerting that she stopped breathing during the seizure, but all would be well.  Eden perked back up, and wanted to go for a walk.  I carried her out into the hall, and felt her body go eerily stiff in my arms.  It was happening again.  I cried for help and the hospital staff came running.  They laid her on the bed.  I watched it all again.  Her body went stiff.  Her body turned blue.  She wasn’t breathing.

Jenny and I stood in the corner while the nurses and doctors attended to our daughter.  It takes a very special person to work in a children’s hospital, and my wife and I will forever count those people among the highest blessings of heaven.  One minute.  Not breathing.  Two minutes.  Not breathing.  Three minutes.  Not breathing.  Four minutes.  We were holding each other and weeping.  They gave her a drug that began with an “A” and she stopped seizing.  Her breath returned, and her color came back.  Jenny and I were holding each other to keep from collapsing.  Eden’s eyes slowly began to open, and the nurse called, “Mom, come over by the bed and talk to her.”  Jenny immediately composed herself and walked to the bed with such grace and calm that I can barely think of it without tears in my eyes.  “It’s alright baby.  Mommy is here.”

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Eden had two more seizures.  They gave her another drug, and told us that should stop them.  She had two more seizures.  They gave her another drug, and told us that should stop them.  No parent should have to watch their baby child stop breathing, turn blue, and lie stiff on a table.  We had to watch it six times in eight hours.  It is like emotional water boarding.  Even now, it is hard to sleep because when I close my eyes I still see it.  I wish I could do justice to Jenny’s courage and grace-ful presence for our daughter all throughout the day, but you would have to have been there to believe it.  Her ability to to put her fears and tears seemingly on pause to calm and sooth our daughter was a type of strength I have probably never witnessed.

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After roughly 40 hours awake, six seizures, a CT scan, an EEG, an MRI, blood tests, urine tests, and more tests, the good news is: Eden does not have a mass in her brain.  She does not have any neurosystemic malformations.  She does not have bleeding on her brain.  She does not have any exotic or dangerous infections.  To top it off, they finally found a drug that was able to control her seizures.

The bad news is: They don’t know what exactly caused the seizures, so we have to live with a mystery.  She has been diagnosed with childhood epilepsy and will have to be on anti-seizure medication for at least two years.

I am not going to refer to my daughter as an epileptic, and I am not sure if I will tell her (when she is old enough) that she has epilepsy.  I don’t want that dark cloud hanging over her head.  Of course I will explain seizures to her, and why she has to take medicine, but that will be enough.  If the doctors are correct, we have every reason to hope that she will live a normal, full, and healthy life.  Jenny and I may carry a special fear in our hearts for a while that we will need to work through, and it may be a few weeks or months before I feel comfortable with her sleeping alone in her own bed again, but I’m hopeful that all will be well, and that all manner of things will be well.

Eden’s favorite movie is Finding Nemo.  It is a movie about fish facing some very difficult and frightening obstacles for a father to be reunited with his son.  There is one moment in the movie where the father and his companion have to swim into absolute blackness and danger deep in an ocean valley.  Dori, the father’s companion, tells him to, “Just keep swimming.  Just keep swimming.  Just keep swimming.”  Sometimes, Eden walks around the house saying it to herself.  For some reason, that phrase was a mantra for me in the hospital, and it is exactly what the Ballard family intends to do… Just keep swimming.  Please hold us in your prayers.

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Special thanks to: Lacey Uhre, Mike & Kirsten Kaiser, and Kari Tornes for watching a sick Titus while we were in the hospital.  I hope the vomit washed out of your shirts.  My dad Doug Ballard, and Todd & Ben Hillard for helping me keep vigil at Eden’s bedside all night.  It would have been a dark, lonely night without you.  Evan and Brandi Loomis for all their care and help.  Jenny’s parents Joan and Craig for flying in all the way from South Dakota to do anything that was asked of them… company, food, tears, cleaning, support, airing up car tires, wine, and more.  My mom and sister Chelsea for threatening to jump in cars and drive here as well.  I’m glad you didn’t need to, but we appreciate the love.  For the many more who called, texted, offered to come, prayed, watched on Facebook, and held us in your hearts… most of you are known to us with gratitude, but you are all known to God.  The Anglican Communion & Catholic Christianity for providing us and millions of Christians with such a thing as Compline for when we want to pray in the darkness but have no words.  Glory to God for All Things.

If you have babies, or parents, or friends, or anyone you care about… hold them tight and tell them you love them.  Life is short.  That ain’t no joke.  The most normal days of your life are glorious beyond all hope and deserving if you look at them right.  We just forget sometimes.

The almighty and merciful Lord, Father, Son, and Holy Spirit, bless us and keep us.  Amen.

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~ by jdballard on March 14, 2013.

15 Responses to “Eden and Seizures: An Update”

  1. Dear Jason and Jenny, You are two very special and wonderful people. Thank you for sharing your lives in such an authentic and real way. Eden is in our families thoughts and prayers. Love and prayers for peace, The Fannins

  2. God holds you gently in his loving arms. We hold you in our hearts.

  3. You guys are precious and have all our prayers. You must be doing something amazing, because it seems like Satan is afraid of you guys, keeps trying to knock you down. God is BIGGER.

  4. We are praying for you all, over here in Moscow.

    His mercies endure forever.

  5. Jason and Jenny, You don’t know me, but my husband and I are friends with Matt and Amy…and via facebook, I learned of your trials. We have a 22 month old as well (her birthday is May 3) and I immediately began crying as I read your blog. I just felt I should write and tell you that you will be in my prayers and I will be taking your advice seriously to see the glory in daily life with my beautiful family. Thank you for sharing your story. – Annie Albrecht

  6. I have been praying for your precious daughter since I saw it on FB. Jason, this was so beautifully written. Still praying. Sharon Woolley

  7. I can’t imagine how terrifying that experience was for you and Jenny. When I think about it happening to one of my kids I can’t hold back the tears. Lacy had let us know what was going on, and we were praying for you guys, but I didn’t understand the severity of the situation. We will continue to pray for Eden and for recovery for your family. I have some close friends who have/are going through a similar experience and have a lot of wisdom concerning seizures, etc. Let me know if you want me to hook you up w/ them.

    Thinking of you guys, Pat Haggerty

  8. Dear Jason and Jenny, We are so thankful that Eden is better. She and all of the Ballards will be in our prayers. Continue to rest in our dear Lord and feel Him holding you all in His arms. As you well know, that is the place to find the strength you didn’t know you had. Bill and Edith Barclay

  9. Jason and Jenny, Titus and Eden – I saw Lacey’s post on FB and have been praying…today asking for a special awareness of Christ’s presence; that He would reveal clearly just how “with you” He is. much love – dawnette

  10. Prayers and hugs for all of you.

  11. Jason and Jenny- Amy and Matt Gaither (my sister and brother-in law) let us know what was going on with your family and we wanted you to know we send our love and prayers.
    I also happen to be the person who posted “Lacy’s Story” on FB. I am a doTERRA rep and I happen to have the oils they spoke of in the video. You should be receiving them in the mail very soon. I pray they work, and
    if you have any questions at all or find you need a larger supply, please don’t hesitate to contact me.

    God Bless. ~Laceye & Jordan Gaither.

  12. Jason & Jenny – I can only imagine the fear & anguish you’ve felt in this terrifying ordeal with your darling Eden. And, also, Jenny with your trials in the past year. Your faith and strength are a true testimony to our Heavenly Father. A contemporary Christian song says “They don’t know that I go running home when I fall down, they don’t know who picks me up when no one is around”. But WE know who it is!
    I’m sure Sam can relate in a small way of witnessing someone having a seizure, when I had a grand maul seizure at the mall in 2009 and you, Jason, brought him to get my car from the parking lot. The look on his face in the ER after my having a second seizure was utter shock, disbelief and helplessness. But, I’ve cried, trying to realize how awfully hard it must have been to see your precious baby go limp & stop breathing. I believe God does not allow more than one can bear and impels us to fall prostrate at His feet in prayer & supplication, and let our requests be known to Him. “His strength is perfect when our strength is gone, He’ll carry us when we can’t carry on” (Stephen Chapman). I’m very grateful that Eden is doing well and praying that she never experiences another seizure. Your entire family is special and precious to me and I’m praying that Jesus wraps his arms around you all and gives you peace and comfort
    The Lord bless you and keep you; The Lord make His face shine upon you, and be gracious to you; The Lord lift up His countenance upon you, and give you peace.

  13. Jason, Your family will be in my prayers. I hope that Eden is improving and not having any more seizures. Patricia Snyder from St. Marks’s

  14. Much love and many prayers from Joy, Alan, and Sydney Ashlock, Don Rogers and Ric Austin. Hang in there!!! Remember, parenthood is the hardest job you’ll ever love. You two are amazing parents from what I’ve been told! Hugs to you all!

  15. Love Love Love. i am always sending you beautiful spirits my love straight from the Hazel House porch. you touch so many people’s lives, and i am grateful to know and pray for you on a regular basis. wrapping my love around you and your babies…..big big squeezes. Love you guys.

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