From White Knuckles to Peace

As a child I was a frequent flier with my family. My dad traveled for work and racked up the frequent flier miles... so we, my mom and sister and I, reaped the benefits of all those miles. We traveled to many states and various types of destinations. What is most etched into my memory however are the flights. My sister and I had a routine of bringing way too many toys in our carry-on bags, because we were determined to not become bored at any point during the flight... even if it meant that mom and dad would eventually have to carry our bags for us. We always ordered ginger ale and my sister always charmed the stewards and stewardesses into finding the pistachios for her among the mixed nuts offered as the in flight snack.  My biggest memory is that I was always extremely nervous during take off, it didn't matter that I'd gone through the drill so many times without any consequences. Even though I had all this familiarity I still white knuckled my arm rest until we were safely in the air.

These days I'm currently white knuckling life until we have safely arrived at Gideon's anniversary, January 31st. There are a lot of things we are sorting out in the short time between now and the end of January. We are still trying to crack the code on my seizures. I had several days of small seizures in the mornings around a week ago, accompanied with an overwhelming need to sleep. Thankfully Mark was able to help me by finding creative times for me to sleep. I finally made it back to my doctor to discuss medication and he took me off the previous medication that was causing my insomnia, and most likely instigating my current small seizures. He was able to find a new one to put me on. This one however has complex side effects to watch out for, including cognitive impairment (such as not being able to verbalize what I'm thinking of...really hoping as a mom that I don't have to deal with that lovely side effect...my children are in constant need of clear instruction!) I'm hoping that I reap only the positive benefits of the medicine -shutting down the small partial seizures before they ramp up into another grand mal!

 On top of the daily concern over my seizures we are gearing up for Mark to leave for New York for a week for his first work trip since 2010 when we only had two kids...to think I was stressed then with just a preschooler and baby... at that time I didn't realize how simple my life was since I didn't even have to deal with school and extra curriculars. Thankfully Mark talked his boss out of the original plan to keep him from Wed to Wed, therefore keeping him away from home over a weekend and consequently away on Gideon's anniversary as well. Not only am I planning for the mere survival of me and my crew, but also for Mark. Mark discovered on his first work trip that he often passes out at high altitudes. Mark's calm and no nonsense plan for this issue is to inform the flight attendant to wake him up when he arrives. I will feel much better when I know he has safely gotten off the plane and to his hotel. (I've had dreams where he just keeps traveling on the airplane around the world all the while unconscious.)

As if the two above situations were not enough, we are also both still battling the grief that tends to resurface this time of year. So many little things can bring back memories of Gideon...Snow, Facebook memories, certain songs, passing the hospital where we had Gideon, etc. Even my Bible study last week really got to me when it covered Jesus' raising of Lazarus, John 11. I often overlook the preceding part to the actual miracle. He stays behind a couple days after receiving word that Lazurus is severely ill, then travels to where Martha and Mary are knowing that Lazurus has already passed away. He has very personal conversations with both Martha and Mary who are in the midst of their grief. Even though Jesus knew his plan is to raise Lazarus he still felt such compassion for Martha and Mary and their grief that he wept. 

 Jesus wept.  John 11.35

That one verse brings such comfort to me, especially right now. Even though Gideon is safely in Heaven, Jesus still has compassion for our hurt and our grief over our separation from our son. Jesus allows room for tears even though hope remains and wins the day. In the end we know where Gideon is and we know we will see him again, but we still have room to miss him. 

You number my wanderings;Put my tears into Your bottle;Are they not in Your book?       Psalm 56.8

The Lord is close to the brokenhearted    and saves those who are crushed in spirit.       Psalm 34.18   

More and more I'm thankful that Jesus made sure this is not the end of the story...that He is the Resurrection and the life. 

 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die        John 11.25

God doesn't want me to white knuckle life, He desires all to come to Him and live a life filled with His peace!

27 Peace I leave with you; My peace I give to you; not as the world gives do I give to you. Do not let your heart be troubled, nor let it be fearful.           
John 14.27

We appreciate any and all prayers for my seizures, Mark's upcoming trip, and our family as we head into the end of January. I'm so thankful to all who have and continue to lift us up in prayer. God is good all the time!

This time of year this specific passage brings such comfort to me!

13 But we do not want you to be uninformed, brethren, about those who are asleep, so that you will not grieve as do the rest who have no hope. 14 For if we believe that Jesus died and rose again, even so God will bring with Him those who have fallen asleep [k]in Jesus. 15 For this we say to you by the word of the Lord, that we who are alive [l]and remain until the coming of the Lord, will not precede those who have fallen asleep. 16 For the Lord Himself will descend from heaven with a [m]shout, with the voice of the archangel and with the trumpet of God, and the dead in Christ will rise first. 17 Then we who are alive [n]and remain will be caught up together with them in the clouds to meet the Lord in the air, and so we shall always be with the Lord. 18 Therefore comfort one another with these words.                     
1 Thessalonians 4.13-18

I love the imagery used here... Gideon fell asleep surrounded by Mark and I and our family's love to a grand welcome of love in Heaven. One day we will be home together, but until then we will remember him... and continue to celebrate the beautiful children we have been entrusted with and continue to work to draw them to God!

It's been a bit since I posted some kid pictures so here's a little overview of our Christmas in Pictures. 

Christmas Eve 2016

Me and My Grammie

Me and My Cousin Sarah and Sister Kate
(On our day trip to Wichita)

In The Middle

I've been mulling over and over in my head how to sum up how life's been in the two weeks since my last grand mal seizure. When you're a mom to four littles life keeps marching forward. There is no pause button on life and I find that out more and more as I grow. There are kids with school work, and never ending potty training, and teething babies. So ready or not I just kept marching forward, especially at this time of year. I appreciate a little bit of busyness right now as a form of distraction from all my memories of Gideon and those scary October days. Until all of a sudden the distractions came to a crashing halt thanks to my oldest Son and his own personal struggles.

Last Tuesday night we got a huge peek into the thoughts in our Will's head. He and his sister Olivia have been doing the Bible study with me on the Gospel of John. Each week their bible study tries to go over one key attribute of God and tries to get the kids to think hard about how they have seen that attribute of God in their own lives. Last Monday the question was "How have you seen God as omnipotent, all powerful?" Will has always been a big thinker and didn't want to give a perfunctory answer...or as he calls them "cheating answers"...so I could tell he was really struggling to put his thoughts into words this time. I, in my head, thought he was just trying to over-complicate the response, so I had him come to my room so he could have a quiet place to think things over. It didn't take long one on one for him to break down and voice thoughts that I know Mark and I struggled and wrestled with in honest and raw ways as adults when learning about Gideon's diagnosis and the enormity of what was going on.

He started by saying he was having a hard time pointing to a personal time God was all powerful because He didn't heal Gideon on Earth. He let Gideon go to Heaven even though he could have given us a miracle. Then he started getting mad at Adam and Eve for the fall and the entrance of Sin into the world... and if God knew this all would happen why would he even allow choices in life? I tried to remind him that put in the same position as Adam and Eve we would have screwed up too... we all have a rebellious spirit...we all seek to rule our own lives. It was so hard hearing the anguish in his voice, he was desperately searching for a way for things to have been better for all, especially his baby brother. It was another reminder of how hard Gideon's passing has affected not only Mark and me, but our children as well. While it makes me sad that Will is going through all of this, I was reminded that God may be preparing him for big things down the road. We have no idea what big things God has planned for each of our children.

The other issue that keeps recurring is my epilepsy. It just seems to keep resurfacing over and over again and reminds me how little control we really have in this life. At my Bible study, the leader gave a wonderful talk regarding Jesus cleansing the temple courts in the Gospel of John chapter 2. She brought up the point that He wants to come into each believer's life and cleanse the sin that we continue to cling to. I know personally I struggle with the concept of control. I want things to stay fairly in line with my thinking, my body to remain well, and for children to be obedient and kind at all times (and all the parents laugh out loud). However, as we all know, nothing stays in line for long, and I know my body especially does not care about my plans for the day. Last Sunday morning I had another semi-seizure, I was awake and felt a ripple of shaking go through my body. Eli has been teething lately and my body is back to erratic waking schedules, but the questions still ring...I've had babies with more erratic sleep schedules and I experienced less seizures...why now? But my mind keeps returning to the Bible and the story of Paul and the thorn in his side.

Paul had a pain, a thorn in his side, and he pleaded with God to remove this thorn. This man was someone following hard after God. He was on fire for God and spreading His word to those near and far. However, even when this righteous man prayed for God to remove this pain, God answered this prayer in the most powerful way for those of us living in unplanned pain:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

2 Corinthians 12.9-10 

Whenever I start getting my seizure headache or auras, Mark and I's new plan is for me to lay in the middle of our bed, instead of walking around during my auras. His logic is that I would be less likely to roll off the bed if I was in the middle. Also if I'm staying put I would not risk collapsing into the shower as I have the past couple times...so there's less chance of injuring myself further. But when I think about laying in the middle of our bed... I think about laying in the middle of God's grace. Resting or surrendering to His care. There's no safer place for any of us to be than to be laying in the middle of God's grace...in the middle of God's plan...in the middle of right where God wants us to be.

I know our lives are so filled with His grace even amid the uncertainty. I've received help in rides to bible study and MOPS from kind friends. I've been able to slow down more and focus on the things that really matter once again. I'm still so thankful that God gave me Mark... He brought us to the same Bible study at KU at the same time. I have four Earthly pictures of God's grace in my children that we get to raise, I have to remember being a cancer survivor that it's by God's grace that I was even able to have any one of them. God graced us with 39 weeks of pregnancy with Gideon and an opportunity to hold our precious baby boy....I think more and more of him especially in October which is a month to remember those who have lost infants and children. Of course the prayers from sweet friends and family are always a huge help to our peace of mind as we continue to live day to day in the middle.

The day to remember all those babies and children gone too soon is October 15th, pregnancy and infant loss remembrance day (but I include older children in my remembrances too). Many will be lighting candles at 7pm and we will be joining with all the others participating. Even if you have not lost an infant or child yourself... feel free to light a candle in remembrance of friends or family who have gone through the heartache of handing a little one over to Heaven. We will not only remember Gideon but also those joining him: Faith, Sebastian, Karalyn, Nigel, and many others.

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!