Walking in the Unknown

You will keep in perfect peace
    those whose minds are steadfast,
    because they trust in you.
 Trust in the Lord forever,
    for the Lord, the Lord himself, is the Rock eternal.

Isaiah 26.3-4

Two years ago today Mark and I began our hard journey with Gideon. This day two years ago was the first time we were told there was a strong possibility that something was severely wrong with our baby boy. As the weather changes to cooler temperatures again I go on emotional rabbit trails in my head. I often wish I could go back to those days when our little boy was still happily kicking in my tummy and we were blissfully unaware of any problems. I know no amount of wishing would make his story turn out differently and I know God walked with us and placed just the right people in our lives when we needed it most. I know our lives are forever changed and I will forever introduce my family by remembering our boy in Heaven.

Mark and I find ourselves at the beginning of yet another journey, but this time with me and we pray that God would once again walk closely with us and that we would know where to go next and who to talk to. We know our support system is still out there and very much in prayer as we begin navigating this path.

So this last Tuesday night my body decided to throw us another curve ball. I felt a few of my small seizures coming on, where I "space out", and headed to the restroom in our master bedroom..it's hard to distinguish a flu bug and an aura at the beginning so I figured I was safest heading to the bathroom just in case. I remember focusing on my deep breaths, which I have found helps to calm me and get the small space outs to pass quicker. However, the next thing I know I'm back in my bed.

Well Mark had to fill in the gaps for me as he was present for the parts in which I had passed out. I apparently passed out and collapsed into our shower once again, my knees are a bit sore with bruises on them today. I proceeded to have a grand mal seizure, the kind people see on TV shows and movies. I began coming out of it shortly after but Mark knew I wasn't completely back to normal since I only claimed to have three children at that point... forget quizzing me on the year just ask how many kids I have. We chose to forgo the ambulance and ER visit this time around. The last time we did go in, the ER doctors just loaded me up on fluids and told me to call my neurologist, so we figured that advice was not worth the money or hassle of getting our kids arranged with sitters.

I will say this latest episode kind of hit out of the blue, because I usually have a several year break in between grand mal seizures. So the original explanation that my neurologist came up with after my July seizure of sleep deprivation is not sitting well with either of us, there has to be more to it than that. I've had stomach pain that has been interfering with my nightly sleep so we need to nail down what is causing that so we can avoid any other issues. Today, to add some fun to the mix, my back decided to add shooting pain to the mix of all the symptoms I'm dealing with. I wasn't able to stand up straight with the pain. So all that to say, once again we are out of our comfort zones and living day to day in the unknown.

I found it interesting that the other day I was discussing with the other members of my bible study about how vibrant my prayer life was during all the craziness with Gideon. When your world is upside down you more easily look up and when things are dark you more easily see the light! I know each night when I couldn't fall asleep after we received Gideon's diagnosis I'd talk to God about it, and later when the grief hit after he passed I talked to God. So I will chose to use this new development to get back to that close walk once again! It will take day to day surrender of my plans, which is hard for my "first born stubborn mind" to do, I like to make plans and once a plan is made I have a hard time dropping it. I know God will be the guide for us and we pray for his guidance as to who to talk to next about my stomach and back issues.

We welcome any and all to partner with us in prayer as we regain our peace again and try to decipher what is truly going on here.

We have so much to be thankful for and I pray as we walk this next unknown road as a family that not only will Mark and I's faith be strengthened, but also the faith of our children! Onto our next adventure with God.

Let me leave you with one of my favorite songs!

Trust in You by Lauren Daigle

https://www.youtube.com/watch?v=n_aVFVveJNs&list=RDG0Dzh3RZn0E&index=14

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

Happily Ever After?

I have been tossing words around in my head for the last few weeks trying to describe accurately what it's been like parenting a new rainbow baby while still grieving my angel baby. (I know theologically that Gideon is not literally an angel, that he is still human in Heaven, It's a term used by grieving parents to describe their children who have passed away.)  This period of simultaneous joy and pain is difficult to express, especially since I don't want to come across ungrateful for the opportunity to have a beautiful healthy and growing boy!

I have been deep in the newborn/little baby period with our rainbow baby Eli for the past 4 and half months. I've had a quick refresher in how crazy the first bit of life is like with a little one. No matter how many times you have experienced the newborn stage, it is still brutal and exhausting. Somehow I managed to build up some crazy expectations of what Eli was going to be like in the last trimester of my pregnancy. Those expectations have come crashing down around me unexpectedly like a tidal wave.

My crazy out of line expectation included a boy that rarely cried. A miraculous newborn that woke up once, maybe twice at night and happily went back to sleep right after eating. I expected that I would be able to provide all the nourishment he would need, without the use of formula...something that I have never been able to do in the past. I would have enough energy to take care of a newborn and have enough energy left over to parent the other three the same way I had prior to having a newborn. Oh how I want to laugh as I type these ridiculous expectation I had.

I should have known from the moment Eli's delivery went longer than anticipated, that all my built up expectations were entirely out of line with reality. Within days of Eli's birth I suspected, and proved to be correct, that Eli had acid reflux and colic simultaneously...This was finally confirmed around one month and he started medication for the reflux but also continued to require a great deal of holding and walking around, and still does. Another thing I should have expected is that I continued to have supply issues with my nursing. (I blame this on chemo because I underwent chemo prior to puberty...and also when in doubt I generally blame chemo even though I'm thankful that it saved my life.) We ended up having to switch to formula after I gave it my all to get things going. Also, Eli appeared to be on the verge of a diagnosis of Pylori Stenosis at around 6 weeks due to some radical projectile vomiting spells, which would have required emergency surgery, thankfully nothing ever came of it. To this day he is still a mama's boy and when given the option to be held by anyone he only wants me...which is both good and frustrating. He really only naps well when he's in the carrier or being rocked or bounced which makes for a good workout, but if I'm tired or not feeling well it can be difficult on me.

Personally In the first two months after Eli's birth I experienced three rounds of the stomach bug, as well as parenting children through various rounds of illness.  At the same time we were on edge about the potential pylori stenosis diagnosis, our family vehicle decided to end it's life (It happened in the pick up lane for Kindergarten at my children's school...Mark had to use his lunch hour to bale me out),This required us to find a new vehicle to fit us all... and left me without a reliable car for a few days. We solved the vehicle issue, but a little while later I started getting crazy stomach and lower back pain. This turned out to be an ovarian cyst that would come to be diagnosed on our 10th anniversary and later ruptured while I was helping at our church's VBS a couple weeks later. So my built up expectations of our 'rainbow' life ..our happily ever after was not met with reality in a fallen world.

Now when reality crashes around someone they can do one of two things...accept it for what it is or fight against it. Unfortunately I did not want to accept any part of what was happening and I internalized much of my angst. I wanted and longed for my happily ever after and I was ready to fight for it even though it was futile. My mood was off for quite some time due to all the chaos, after birth hormones, and continued grief over Gideon. I blamed myself for all that was wrong, even though reality and logic would state that I could not change or control what was going on. In my head a voice kept whispering...  "You're not getting what you deserve. Maybe if you work a little harder you can get that happily ever after."

 Thankfully I was able to decipher that my thoughts were incorrect, even though I couldn't rid myself of the feeling that I had somehow failed. With the help of medication and a loving husband who constantly reminded me that I was doing a good job, I started accepting things as they were. I was able to find some peace. However, the grief still remains and I will still get caught up in my memories of Gideon as I watch Eli.

Sometimes I feel like Gideon is a balloon released into the air and during the first year of grief I was able to see that balloon as it drifted slowly. However it is hard now that it seems as if that Balloon is a mere dot in the sky. I remember him, but not with the clarity that I once did. That makes it harder on me as a mom to not vividly remember the feeling of his weight in my arms, the feel of his tiny hand on my finger, or any other tiny detail like that. I know this happens with each of my babies, and those memories are generally replaced with newer ones as they hit milestones. However with Gideon those tiny memories have to last me until I see him again in Heaven. I find myself repeating that 32 minutes of life and 24 hours of holding him is not enough for me. His story was too short and oh how I wish I could rewrite it for him, but the story has been told and I have to accept God's direction.

Life will not include a happily ever after until Jesus returns someday. If I received a happily ever after in this life I may not long as much for Heaven. I'm reminded of a wise saying I heard once: For the believer life on Earth is the closest that person will ever get to Hell...and for the unbeliever life on Earth is the closest that person will ever get to Heaven. I'm thankful that there is so much better waiting for me in Heaven.

In the meantime I can rest in the fact that God has already given us so much to be thankful for. Even though life with Eli is not perfect, we all still love this boy that God has blessed us with. It is fitting that our rainbow baby wants to be held so much, as we so longed to hold Gideon past the 24 hours we were able to on Earth. I'm thankful for the other three beautiful children God has given us, and their love for one another. I enjoy Will's diligent leadership and help in various areas such as making lunch for his siblings or helping Luke get buckled in the car. I love Olivia's eagerness to learn and read, as well as her love of dance. Luke lights up the room with his silliness and his begging to receive kisses before bed...if we don't give him enough kisses you can hear him scream down the stairs "kiss chothers"...I know all too soon he will be too cool for kisses from mommy. If I keep my mind focused on God and what He wants from me, I know I'm not failing and I know that in his timing I will get my happily ever after in Heaven.

Eli's dedication Picture

I called on your name, Lord,

    from the depths of the pit.

 You heard my plea: “Do not close your ears

    to my cry for relief.”

 You came near when I called you,

    and you said, “Do not fear.”

Lamentation 3.55-57

I've lived through both a hard and joyous pregnancy and birth. I know that God has seen me through both situations and I know he will continue to walk through this time with me. I'm thankful for both because even though Gideon was the hardest journey Mark and I have ever walked thus far, it drew us closer to God and there was no room to sit on the fence about our faith....we were either all in or all out. I'm praying that His peace will return no matter what lies ahead!