Fears Rush In

Family Time at the Zoo

Ever since this last seizure experience Mark and I have been battling the fears that like to creep into our minds. I was trying to explain the exhaustion of my thoughts to a friend recently. After something like this rocks your world you analyze everything you used to take for granted. I remember taking the kids for a walk the first time and trying to figure out which route would be safest...should I walk down busier streets or neighborhoods in the event I had a big seizure while walking? Should I take a bath...my go to stress reliever...or has my head been calm enough for me to trust my body not to betray and potentially drown? Even my husband is on edge since he was the witness to it all, if he hears a large crash near to where I am he checks in with me. If I feel small ones coming on he requests I lay in the middle of the bed, or somewhere soft so I don't injure myself in the event something big happens next. These fears play in our minds along with bigger ones.

The bigger ones come rushing in as to why did this happen now? I don't quite believe the answer my neurologist gave of it being sleep deprivation and an ineffective dosage of medicine. This is my 4th time with a big seizure...the first also occurred in July but 25 years ago and was during my chemotherapy so we could explain it with the meds being in my system. The 2nd came in my senior year of highschool and we later figured out I had been misdiagnosed with PTSD for years. I thought I was having flashbacks to chemo when in reality I had been having partial seizures. All of those partial seizures built up and came out in a huge grand mal right before my winter finals senior year. The 3rd one was explained by my first pregnancy. This time the explanation seems to be lacking and leaves me feeling like a ticking time bomb. What mother is not sleep deprived? How many times have I been sleep deprived without anything happening?

I explained to the Neurologist's assistant that we did not accept that answer as the whole truth so my doctor is ordering an MRI as a next step to see if there is something there. Part of me wants something definitive to show up and another part doesn't want anything to show up at all. If something shows up on the MRI it may mean something even scarier than what I've been living with.

What do you do when you're living in the unknown? Brain stuff feels very scary because it's a lot of trial and error before finding what works. It takes a great deal of patience and an ability to look at the big picture. At the same time I can't give up my right to advocate for myself with doctors, even specialists. I know my body, but even more God knows my body. He knows my brain and he knows my future so when I get wrapped up in the what ifs I have to look to God and the evidence he's already given me of his healing power.

My first seizure was probably the scariest one. I was 7 years old and taking a nap on the couch when my parents sent my younger sister to get me to come for dinner. She attempted to wake me up but I wouldn't budge and had a smirk on my face. Anyone who knew me when I was going through chemo knew I was an expert at the fake sleep so that the residents at KU Med would leave me alone. So my parents were convinced I was trying to fake again. However I was not waking up no matter their attempts. I'm not certain at what point I started seizing, but 911 was called and an ambulance, fire truck, and other first responders came to our house. My parents asked for them to take me to KU Med since that's where I was being treated for my cancer. They ended up having to make a detour to Shawnee Mission Med to get me to stop seizing and then they transported me to KU Med. I remained in a coma for 36 hours. Hard discussions were had with the doctors at KU Med as to my chances of survival and whether I would have a certain quality of life. However, I squeezed my father's hand and they knew we would get through this. That was the July before my 2nd grade year. I woke up unable to communicate, walk, or feed myself. Thanks to my parents for their diligent work with me, I was able to enter 2nd grade as an average kid.

When I finished chemotherapy my parents threw a party and at a special ceremony my father, with tears in his eyes, read the story of Jairus' daughter.

 Now when Jesus returned, a crowd welcomed him, for they were all expecting him.  Then a man named Jairus, a synagogue leader, came and fell at Jesus’ feet, pleading with him to come to his house because his only daughter, a girl of about twelve, was dying.
 While Jesus was still speaking, someone came from the house of Jairus, the synagogue leader. “Your daughter is dead,” he said. “Don’t bother the teacher anymore.”
 Hearing this, Jesus said to Jairus, “Don’t be afraid; just believe, and she will be healed.”
 When he arrived at the house of Jairus, he did not let anyone go in with him except Peter, John and James, and the child’s father and mother.  Meanwhile, all the people were wailing and mourning for her. “Stop wailing,” Jesus said. “She is not dead but asleep.”
 They laughed at him, knowing that she was dead.  But he took her by the hand and said, “My child, get up!”  Her spirit returned, and at once she stood up. Then Jesus told them to give her something to eat.  Her parents were astonished, but he ordered them not to tell anyone what had happened.

Luke 8. 40-42, 49-56

They quite vividly relate to that story, as my parents felt I was on the edge of death and Jesus healed me so completely. I try to remind myself in the hard times that if God wills it, He will heal me. If I face another hard road He will walk with me and I know He's placed a wonderful support system around me. After facing all we did with Gideon we can no longer be confident that healing is how we want it to be. Often God heals in creative ways and we have to give it all up to Him again and again, trusting Him and His ways.

God knows how to time my Bible studies to bring just the right passage at the right time...this is what I opened to today:

 Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.
James 5.13-16

So thankful for all those who stand with us in prayer once again no matter the outcome! Trying to remember the many blessings He has already given us!

Familiar Storms

If there is one thing I've learned in 32 years, it's that just because you get through one storm, doesn't mean you are completely in the clear. The last week has been rough, but before I get into that let me rewind to a storm my husband and I experienced as newlyweds.

A little over nine years ago on our first married Valentine's day my wonderful new husband had to call 911 on my behalf. I remember waking up that morning feeling upset to my stomach. I felt both dizzy and needing to be sick so I decided to go to the bathroom of our tiny student housing apartment at KU (we shared 500 sq feet) on the off chance that I was going to be physically sick. I remember feeling one of my small partial seizures (I feel like life is going in slow motion and and I usually feel certain things but can't communicate with the outside world-to anyone watching I appear to be staring off and look pale) coming on and calling out for Mark. Mark recounted that the next thing he knew I had fallen to the ground unconscious and began seizing. So he called 911 and I was taken to Lawrence Memorial Hospital. After a very short time of observation we were sent home and told to contact my neurologist. That is about all the instruction we received at the time. I began doing research on my own as to why I would have had a grand mal seizure out of the blue..I had had partial seizures frequently enough in his presence, but the last time I had a grand mal seizure (the kind shown on TV or movies) was my senior year of high school. One suggestion from an online forum was that hormonal changes such as pregnancy can set off seizures in women. So I took a pregnancy test while Mark was at work to rule it out, expecting it to be negative, but sure enough that was the culprit. We later welcomed our surprise first born Will that following October (My constant reminder that life goes according to God's will, not my own.)

Following the big seizure we didn't have the smoothest of transitions into regular life. I had to find a way to make up the internship hours I had missed due to my recovery for my social work degree, all the while not being able to drive myself anywhere. Mark would drive me from Lawrence to the Kansas City Ronald McDonald House and hang out there while I worked, on the off chance I would have another seizure. I coordinated rides between Mark, who was both a full time student and working part time at UPS, and my parents who lived in Shawnee at the time, all the while finishing my senior year of college.

The weeks leading up to this July 3rd I had been living with a sense of impending doom. I think that the idea that July 3rd is the anniversary of my Leukemia diagnosis, and our daughter Olivia is the same age I was when I was diagnosed is what scared me more than any previous year. My biggest memory of July 3rd 1990 was that my life went from innocent kindergarten graduate to girl fighting for her life. I gained a big vocabulary that summer including spinal tap, bone marrow biopsy, red cell, white cell, blood count, IV, blood transfusion, etc. So much changed for me that summer and it was my first taste of what it was like to cling to God and his promises even when life seemed bleak.

I saw this once on Facebook and it's fairly accurate for me and my life:


All the doom and gloom about this year seemed to be built up in my head...but when I woke up Sunday morning I felt sick and weak and didn't see anyway I would be able to attend church or help teach our Kindergarten Sunday School class. So my brave hubby went to church solo with our entire crazy crew. I stayed home and did my best to rest. Mark had been back home from church for only a little while when I woke up from my nap feeling off. I headed to the bathroom all the while feeling dizzy and somewhat like I was having a partial seizure. The next thing Mark heard was a loud thud/crash and when he went to investigate he found me unconscious laying partially in the shower and seizing. He called 911 and the next thing I remember is waking up in an ambulance being quizzed on what year it was. I was taken to Olathe med where they pumped me full of fluids and observed me for a short time. I told the ER doctor about my pregnancy playing a role last time so they made sure to run a test, which came up negative...I was discharged with similar instructions to contact my neurologist and avoid driving and various other risky activities such as swimming, until we feel everything is under control.

Recovery this time around has been a bit rougher as I'm a stay at home mom and have four kids to take care of. We also used up almost all of Mark's PTO with Eli so we have had to deal with real life faster. Our Eli is also teething so sleep is extremely interrupted so I think that has played a role in my continued dizzy spells and weakness. I'm also plagued with fears of another seizure each time I go to sleep. We live with the mindset of go to bed in something that I wouldn't mind being seen in, on the off chance I wind up back in an ambulance. I'm praying we can get back to a place of peace and that the EEG test my doctor ran will shed some light on why this happened.

In the meantime we appreciate any and all prayers for peace for our family. I hate that I have to teach Will why and how to call 911 on the off chance Mark is not home to do it. I hate that our fun summer seems to have been interrupted by my body once again, the last two summers my pregnancies got in the way. Please pray for my husband as it's scary to him when my seizures happen and he doesn't like being at work when I'm still dealing with the aftermath. Pray for my children and that we can salvage what is left of their summer vacation. Last please pray for me, that I can go to sleep in peace.

"Know that the Lord has set apart his faithful servant for himself;
    the Lord hears when I call to him.
 Tremble and do not sin;
    when you are on your beds,
    search your hearts and be silent.
 Offer the sacrifices of the righteous
    and trust in the Lord.
 Many, Lord, are asking, “Who will bring us prosperity?”
    Let the light of your face shine on us.
 Fill my heart with joy
    when their grain and new wine abound.
 In peace I will lie down and sleep,
    for you alone, Lord,
    make me dwell in safety."

Psalm 4.3-8