Rachael’s Journey: Epilepsy, Hemispherectomy

This post, a diary of sorts, describes events in the life of our family and daughter Rachael, who has triumphed over epilepsy and continues to bring joy and humor to our lives.

May 12, Rachael’s Birthday

I took Rachael into the E.R. at two weeks of age.  She was diagnosed with Spinal Meningitis.  It was awful.  I had just been released from the hospital from a post -delivery blood clot (DVT).  The weather was so hot.  She slept through two feedings.  I kept checking on her because I thought she should be hungry.  I chalked it up to the extreme heat but tried to wake her up anyway.  When she opened her eyes they rolled back in her head.  She was pale and limp but was breathing and warm.  I called her Dr. and he told me to take her in immediately.

My dad came over and took me because I wasn’t supposed to drive.  I waited and waited for them to come and take her back until finally I walked up to a nurse and choked through my worried tears, “How long are you going to make us wait?  I know you are busy.  I’m not trying to be pushy, but look at her!”  I held my daughter out to her while sobbing.   The nurse’s eyes got big and she rushed us back.  After a spinal tap she was diagnosed with Bacterial Meningitis.  She also had a stroke that resulted from brain swelling.  Rachael was in the neo-natal unit at Butterworth hospital for 7 weeks.  There were many times we feared she would not make it, but she did.  We had no idea what her future would bring, but we loved her.

That fall, Rachael and I enrolled in an infant-parent program at Ken-O-Sha school where parents received support and kids received occupational and physical therapy.  Many of the parents became friends and have supported each other for many years. Many of us still try to find time to get together.

Rachael’s battle with Meningitis left her with cognitive impairment, epilepsy and mild cerebral palsy.  She also lost partial hearing in one ear and we think she may have a vision deficit, but she refuses to cooperate with any testing (SPUNKY!).  But, we loved her.

She did really well for a while until her teenage years.  She started to end up in the hospital every spring and fall in Status Epilepticus (life threatening). At one point she was having hundreds of seizures per day, medication was ineffective, she was unable to go to school, and I was sleeping on her floor to make sure her airway stayed clear.  Rachael was miserable and I was exhausted.  We were told by the hospital there was nothing more they could do for us.  We were sent home to wait for the end.  But we found out there was one more option, brain surgery.  The decision to try this was difficult.  But we knew for her sake we had to do what we thought she would want if she could make the decision, and we knew we could not just give up.

Feb 1991


Rolling over in bed and peeking out the window, as my alarm clock screamed, I realized it was freezing cold and snowing.  Brrr!!  Getting up now would be like dumping a bowl of ice cubes down my back.  I just wanted to stay in my warm safe bed and forget about the many things I had to do.  But, no…Julie is counting on me to watch her kids and give her a ride to school.  I have to get up.  Although there was still this feeling I should have stayed in bed, the day started out pretty well.

When the time came, I picked up Julie, My sister-in-law, and we buckled her kids into the back seat along with mine.  We pulled up to GRCC and just as Julie was getting out, her daughter Mandy said, “Mommy, I don’t feel good.  I have to go to the bathroom.”  Julie took her into the building to the restroom.  When they emerged a short time later, all seemed to be well.  I assured Julie that Mandy would be fine for a few hours and not to worry.  We drove off and headed towards the photo shop where we would pick up my husband from work.  It was about a half hour before he would be able to leave, but I had brought plenty of toys to keep everyone busy.  Mandy had other ideas.

We had only been waiting in the car for about five minutes when I heard a small whining sound coming from my tiny niece in the back.  “What’s wrong Mandy, sweetheart?”  I asked.


She promptly emptied her lunch into her lap and upon the seat of our new-used car!  OH NO!  I told Sarah and Rachael to climb into the front seat, where I buckled them and handed them a pile of toys.  I turned the car heater on a full blast and proceeded to strip Mandy down to her underwear and to clean up the mess.  I put a spare sweatshirt on the shivering little girl and found a plastic garbage bag for her odiferous clothing.  Oh how I wished for a clothespin!  We settled back in to await the remainder of our imprisonment when Mandy started moaning again.  “Ohhh!!  Mommy!!”  I ordered Sarah, my oldest, to keep an eye on everyone and not to touch anything on the car.  I scooped up the groaning green-faced child and ran through the back door and into the little bathroom in the back room of the store.  “Are you ok?”  “No,” she whimpered in a very small voice.  “Well if you have to throw up, do it in there.  Ok?”  I took her sweatshirt off so it would not become another casualty.  I had run out of spare clothing!!

Then to my utter panic, Sarah came running in the back door screaming, “MOMMY!!!  RACHAEL’S DRIVING THE CAR!!!”  I ordered Sarah to stay in the bathroom with Mandy and sprinted out the door in time to see our car backing slowly out of the parking spot and into the adjacent street.  Running to the car, I yanked the door open and threw the lever into park.  “What are you doing Rachael? I told you not to touch anything!!”  Rachael had maneuvered into the driver’s seat and was standing up with both hands on the steering wheel.  Fortunately she had only bumped it into neutral.  I drove the car back into its spot grateful there had been no traffic on the otherwise busy street.

I breathed a temporary sigh of relief and the looked up.  Sarah, curious to see what had become of her disobedient sister, was peeking out the back door.  OH NO!!  Where’s Mandy?!?  While I ran in the back door, Mandy had panicked and headed the wrong way out onto the sales floor and through the crowd of customers, dressed only in her underpants.  I caught sight of her disappearing out the front door to look for me!!  I turned and ran the short distance out the back and caught her up on the way to the car.  I commanded everyone in and to, “Sit down, be quiet, and DON’T MOVE!!”

I felt like the most terrible mother in the whole universe.  I wanted to disappear off the face of the Earth.  Most of all I hoped no one would recognize me as they came out of the store.  Now I chuckle when I think of it, although it was not at all funny at the time.

Rachael will never be able to have a driver’s license but she got her opportunity to drive!!


Christmas Shopping with Rachael

December 22, 2010 at 10:34a

Took Rachael out to lunch and Christmas shopping yesterday.  Panera bread was packed…we could not get in line because it was too narrow for her wheelchair and several people walked right in front of us.  When one realized what was happening they let us in front of them so we could get in line to order.  We ordered and got our food.  An employee carried the tray for me (because have no way to do it while pushing a wheelchair)…he looks all over and can’t find an open table.  He suggests getting it packaged to go so we can sit in the food court.  When two ladies finishing their meal heard what was happening they gave us their table and said they’d walk and carry the rest of their food since they were almost done anyway.  Not to mention all the doors that got held open for us EVERYWHERE! WOW!!!

Thank you!

Happy Fourth of July!!

July 4, 2012

This holiday weekend in July 2004.  I spent the weekend at Cleveland Clinic with my Daughter Rachael.  Rachael has Epilepsy, cerebral palsy and is mentally impaired which resulted from Spinal Meningitis she contracted, battled and survived at two weeks of age.  She had been going downhill and getting worse for several years and we were not expecting her to make it past her teen years.  In 2004, we were told by the local hospital there was nothing more they could do for us, we could try Cleveland Clinic.  They sent us home with Ativan (IM) for when she was in Status Epileptics (almost constantly) and advised us to make her comfortable.  My husband a Firefighter/EMT and I were well-versed in how to give injections.  This was the last resort.  She was having hundreds of seizures a day, interrupting her life.  She could not eat or walk without help.  She spent most of her time at home, not able to go to school.  I slept on the floor in her bedroom many nights, to maintain her airway when she’d have a seizure.  We were waiting for the day she would simply not wake up. Status Epileptics is a life threatening condition that is a state of constant brain seizure and is life threatening.

April 2004, our last resort.  Brain Surgery.  Yikes.  What do I do?  How do I make this decision for someone else?  Let alone my daughter.

We were sent to Cleveland Clinic for an evaluation and work up to see if Rachael was a candidate for Epilepsy Surgery.  In the waiting room we observed children and adults with Frankenstein-like stitches crossing their shaved heads.  Some were in varying states of alertness, some with blank stares; one boy was playing video games.  I started talking to a young adult male who was sitting near me drinking coffee.  He was alone, waiting.   He was cheerful and upbeat and said he had been helped greatly.  When he was called back for his appointment and stood up, he was walking bent over sideways, with one arm behind him holding his suitcase.  I almost dropped to the floor.  How bad was he before the surgery and is this a complication kept flashing in my mind, internal panic.  I did my research.  I checked out the doctors.  I memorized the procedures.  I researched the outcomes of these surgeries at Cleveland Clinic.  Wait for the inevitable?  Or do everything we can to try to ensure the best life possible for Rachael…or could this make it worse?  Such pain.

As parents should we give up and let go?  Could I live with that?  Did I need to do something and not nothing? Could I allow someone to go into my child’s brain and mess around in there?  The numbers and research were in our favor. I spoke to Martha Curtis, a musician who had a similar surgery.  It was helpful to get the insight of someone experiencing Epilepsy.  My daughter could not tell me what it was like. We decided to go ahead with the surgery.  We could lose her now or later anyway, and right now she was miserable and we were beyond worried.

When my employer found out (City of Grand Rapids) they illegally cancelled Rachael’s Health Insurance within 24 hours.  We were able to address the insurance issue legally, and by the time July came Rachael was triple insured, and we had the assistance of Children’s Special Health Care Services.

In preparation for Rachael’s surgery she got a haircut.  We donated her long silky beautiful brunette hair to locks of love.  I cried in the hair salon and pretty much the rest of the day.  Rachael did not miss her hair at all.  She seemed to like her cute bob.

July 4th weekend 2008

My husband Mike and I drove to Cleveland, he sat holding my hand for almost an entire day as we waited.  I prayed that we would not have the Neurosurgeon come out and say sorry but she’s gone.  Instead he came out to tell us all went well, even though it had taken longer than expected.  It was the best thing we could have done for her.  She is not totally seizure free, but she has recovered remarkably well and quickly.  Her health is stable, she rarely gets sick.  AND she is happy and participating in life.  Rachael’s life was saved and much improved.  I have never regretted the decision since.  There is not a single day that I am not thankful to God for helping us through this, to friends, family and co-workers, and to the surgeons, doctors, nurses, home health aides.