We have been awake since 3:00 AM and my thoughts are all over the place. Missing my babies, missing mom, missing home, cold, overwhelmed by God's love and goodness, sad about Michala's seizures, thankful for the opportunity to try the cannabis oil, glad it is working for her, trying to balance life for Marlee Anne, thankful she has the heart she does, trying to learn to live life without our precious children, thankful they are with Jesus, thankful Mike is able to be here with us, thankful to those that have made that possible and so much more. 

Not sure how much Merry Christmas will be in the post but I truly wish ya'll a very Merry Christmas. 

Monday some dear friends from Georgia came to Boulder. They are a precious "C" family. They are the ones who show up at the hospital when you are inpatient at Christmas, they are the ones bringing dinner over, they are the ones dropping off cookies just whenever, they are the ones praying for the next scan way before it happens because they know your heart, they are the ones to text to see how it went and to make sure there is NED or no problems, they are one of the first ones to show up at the house when your babies have passed away. So of course they would be the ones to plan a trip to see us the week of Christmas knowing it would be a hard week. The distraction was nice as well as spending wonderful time with them. 

Yesterday was hard day for Michala. She had two bad seizures. One early in the morning and the next while we were out and about. So thankful Mike was there for them. He continues to be my rock. This morning she has already had two really bad hard seizures. It's time for an increase in her cannabis oil. Please be in prayer with us as we increase her dose this morning. 

Grace flies in tomorrow.  So thankful she will be here with us. That will help us get through these next few days, give us some wonderful time with Grace making awesome memories!

Christmas gifts have never been huge in our family but we have been blessed by surprises from others this year. It's been nice to be loved across the miles. The cards and letters are such a wonderful reminder that we as well as Mary Elizabeth and Abe are being remembered. Thank ya'll! 

Yesterday as we were walking around Estes Park right after Michala's seizure was over I received a text from a dear friend. I know she doesn't know just how much the timing of her text meant. She didn't know until then about Michala's seizure. Just knowing she was praying for us meant so much. Please never take the power of prayer lightly. We covet your prayers so much! 

Well I think this may be a long day for us all. Sorry for the random kind of mismatched thoughts post. Thanks so very much for the continued love, prayers and support. 

Fort Collins, Cameron's Pass & Wyoming

The past three days Michala has only had two-three very brief startle seizures each day. Tonight she enjoyed her daddy sliding her around on the frozen pathway. 

We had a packed weekend. Friday we enjoyed going to Fort Collins. We are still looking for a place to move to when we have to leave this house. Our friend told us to check out Fort Collins and Windsor. If anyone knows of a place or area for us to look please let us know. Please be in prayer about this with us too. 

Saturday we drove into Wyoming so we could mark off another state on our list. We didn't take any medical cannibis oil with us so we weren't breaking any laws. We saw some beautiful antelope. 

We drove through Cameron's Pass in Colorado and the snow was incredible. Just breathtaking. The beauty and the cold! 

Sunday we had a wonderful church service. Imagine 5,000 people holding lighted candles and singing Oh Holy Night. We met a precious older couple. Marlee Anne sat next to the wife and it was precious to hear her talk with her like she does with our dear friends at our home church in Georgia. 

As the days are leading up to Christmas my heart is heavy. As hard as I try and as much as I cry out to Jesus the tears still flow. I long for my precious babies. I am reminded of the sacrifice that God made when He gave up His son for us. He knew that Christmas when Jesus was born what was ahead. We are incredibly blessed and thankful! 

Thank you for your continued prayers!

One week on medical cannabis oil

It has been a week - 7 days since Michala started medical cannabis oil. I have tried a few times to put into words the changes we have seen. My heart is so incredibly full! I have tried to put the emotions aside so they wouldn't cloud my reasoning. As Mike says we are being cautiously optimistic. We have been through drug studies and we know the honeymoon period well, of starting a drug and it works well until the body adjust and it works no more. Also because of the studies we have been in we recognize the importance of journaling seizure activity. 

 

For those that don't know the, before CBD, here it is. Michala had 3-6 seizures everyday. The seizures lasted anywhere from 15 minutes- to an hour. These seizures interrupted her day, seemed to cause her pain and she would be out of it for quite awhile afterwards. She also had around 20 startle seizures a day. These would happen when someone coughed, made a loud noise, scared her and sometimes even if we called her name. They can last up to 5 minutes and sometimes go into a different type of seizures. She also had screaming seizures that were often tied into one of the other seizures. 

 

Day 1 she had eye contact with us. Not just a glance but real eye contact. Clear eyes, less nystagmus, which is where her eye moves involuntarily, decrease in seizure frequency, length and strength. She had 1 seizure that lasted 5 minutes and 1 that lasted 5 seconds. No screaming seizures. The 5 minute seizure was midday so it was recommended that we do the dosing 3 times a day instead of 2 times. She gets the same amount but we divide it by 3 instead of 2. She takes less than half a teaspoon the entire day. 

We have an office in our house where Mike works and Marlee Anne does school. As Michala was exploring, as if she was seeing this house for the first time, she went down the 2 steps into the office with no trouble at all. Before I got to her to video it she had already decided that room wasn't exciting enough for her and she was back up those 2 steps. 

 

That night as we were getting ready for bed I asked Michala for a hug. This is something I have done for as long as I can remember. I would put her arms around my shoulder and ask her for a hug.  I would pretend she was hugging me. This time when I asked her she leaned in and put her arm around me. She doesn't use her right arm so she put her left arm around me. Well she didn't before CBD. We are seeing her use it more. I also asked for a kiss like I always do. This time she leaned in to kiss me. 

 

I should have mentioned that before CBD she was in a lot of pain. We had to give her pain meds daily for the headaches she had, as well as the phantom pains she had. She would grab her stump from her amputation, because of her cancer and scream. This was a daily thing for her. Since starting CBD she hasn't had any pain medication. She doesn't grab her leg and has not held her head and cried in pain. 

 

Day 2 she had 3 brief seizures. They were so brief we are not sure if they were startle seizures or clonic seizures that just stopped and didn't go into a typical seizure for her. 

 

Again no pain meds, no screaming out. Oh yes and less aggression. She was taking Risperdone to help with her aggression and she has been taken off of that. She is still on her pharmaceutical seizure medications. 

 

Day 3 she had 4 seizures that we would call startle seizures or short seizures. They were very brief like a startle but there was nothing to startle her. 

 

Day 4 was a horrible day. She had 3 seizures lasting 50, 22 & 32 minutes. She had to have rescue meds to get them stopped. Deep breath here because I was unsure what was up. Michala typically has increased seizures with the full moon, rain and cloudy days. It was almost a full moon and a big storm was coming over the Rockies.  

Day 5 we were anxious to see what the day would be like after the day before. She had 2 really short cluster seizures. They were 2 and 5 seconds. Thankful for a much better day. 

 

Day 6 was 3 startle seizures that she recovered well from. These are ones we could have missed if we had not been right with her when they happened. One we thought she would go into a full blown seizure but even that one was over quickly. We met our friends from Georgia at their layover in Denver. Two of them asked Michala to give them a hug. She leaned in to hug them. This was good to see that it wasn't only when we asked her. 

 

Day 7 as we were praying this morning I asked Michala to hold my hand, because we hold hands when we pray, but she never has. When I asked her she reached over and held my hand. It was brief but she understood what I was asking her and was willing to do it without me reaching for her hand. She has never done that when I asked or held my hand even for a second. She had a startle seizure that was a hard one for her. It lasted a minute. She had 3 brief startles that were just quick jerks.

This morning she leaned in to hug and kiss me without me asking. It was after her yogurt and medicine so I saw it as her way of telling me thank you.

We are also seeing positive changes in her sleep pattern. There could be a couple of reasons for this. She is up and active all day long since starting the cannabis oil. She isn't taking all those seizure induced naps and missing things because she isn't having those seizures that cause them. She may take a brief nap if she is sitting with someone but that's not everyday. When it's time for her to go to bed she is sleepy and sleeps more soundly. She is not having those times where she wakes up throughout the night crying or screaming. 

 

We know we have a ways to go. We just started this journey but the first week looks so very promising. We are aware her seizures may start back and we may have to make changes to her dose. Right now we are so very thankful for this opportunity to help Michala in such a huge way. Thank ya'll for going on this journey of hope with us and keeping us in your prayers. 

 

Are you a Mary or a Martha?

Over the past month I have seen God use and bless us with many Marys and Marthas. A dear friend of ours is a Martha that we could not do without. She is constantly on the go, always offering to run errands and do whatever she can to help ease the load. One of our oldest friends has always been a Mary. I am not sure she has ever sat on any of our furniture. She sits on the floor usually with one of our children or at my feet listening intently to what one of us is saying. Our nearest and dearest is the perfect combination of Mary and Martha. She walks in and after greeting all of us with hugs she makes a quiet little swoop through the kitchen to tidy up or most times in my case clean up the kitchen, which includes the dishes she is sure to find in the sink from our last meal of the day. After that is done she plops down on the floor, usually with open arms for whoever can get there first to cozy up for comfort and love. With all of these come love and laughter. 

I am not really surprised when a "Mary" comes in but I do love to observe them. I love to see their interaction with our children. They greet them on their level, interact with them and quickly pick up on their likes. They take time to see which side Mary Elizabeth is favoring that day so they go to that side so she can see them easier. They realize right away Michala loves to clap and you have her heart with that. Marlee Anne is not your typical 12 year old girl. Most times a Mary will see that and immediately treat her that way. 

I love that our corner of the world includes both Mary and Martha because we need them both. Thank you to each of you for being that in our home. Just a little food for thought as you go through your day. Are you Mary sitting at the feet of Jesus listening or are you Martha busy, busy, busy? 

Please leave negative at the door.

We don't expect 100% support from everyone. We know that some people will never understand it. What we do ask is that no matter what, you pray that God's will be done, you love & support us no matter what or at the very least you don't say anything, especially please do not be negative about it. We welcome questions to better understand the cannabis oil or why we cannot get it legally in Georgia but please do not tear us down or be negative about us doing what we feel led to do. 

This is not a knee jerk response that took place after Abe died. We are not entering into this without a great deal of prayer. We held onto HOPE that Georgia would do the right thing in 2014. When it didn't pass we started the process to get Michala & Abe into the Epidiolex study. The one that Georgia state representative Sharon Cooper said we would be able to do at CHOA before the end of the year. Yes she told it to our faces while we were at the capital waiting to get all 3 of our children in wheelchairs on the elevator. It's too late for Abe & it doesn't look like Michala is going to be able to get into it. Waiting is not an option at this point. 

It would be a lot easier to stay at home. Going to a different state to get our children help is not new to us. University of Alabama, Boston Children's, and University of Iowa have been our "homes" at one time. 

Mike will continue to work to provide for our family as he always has. Especially now because we will have 2 homes along with 2 sets of utilities and travel expenses. Our family will be apart once again. We will be leaving family, friends, doctors, and our local support system. 

We would love your prayers please. Thank you!

Such incredible pain

I have never experienced pain this intense. Even when we received the children's diagnosis or when the doctor told us Michala had stage 4 angiosarcoma cancer the pain wasn't like this. I have never experienced loss at this depth. I was a daddy's girl and hurt deeply when my daddy died. Even when we lost our little boy we never held. When my brother died I wasn't sure how I would make it without him. I lost my best friend in November when my mom died but still the loss wasn't like this. 

I know the scripture, I know that Abe is in heaven but still the pain is terribly intense. 

There are times when it hurts to even breathe. Sometimes I literally have to remind myself to breathe. Simple things in life are no longer simple or easy to do. 

I truly feel as if I have lost my joy. I feel lost. It's hard to pray and read my bible. There have been times like this when we are in the hospital and were told they wouldn't make it through the night but they have passed. Too much, too soon?

No matter what happens is the title for our family blog. The rest of the Johnson Brothers' song says I will give God the praise. Everything happens for a reason. I even preface that with I am a firm believer that everything happens for a reason. This too shall pass is something else I often said. All these things I have said so often and truly believed them. Where is that belief now?

Why the struggle within me? Why the battle?

I love to craft but just packed up all my ribbon without one single care. I love to write and share my heart. Now it's hard for my heart feelings to even get out. When it does my thoughts are jumbled. I am not able to read a book because within a few lines I forgot what I was reading. My love for TV and even Hallmark movies has faded. 

When I close my eyes I see Abe sitting in his car seat. His coloring as we have seen before when he has a seizure. I touch him expecting him to gasp for a breath but nothing. If I am able to drift off to sleep I wake up at 2:00 in a panic because he always had a seizure at 2:00 AM. 

As we try to do things together as A family there is a wheelchair missing, a car seat missing, Abe is missing. 

Some say it takes time. Some say 

you have to find a new normal. I don't want to find a new normal. I do want to find peace. I want to find joy. 

The tears continue to flow on a regular basis. Often a memory comes and I can smile. Sometimes I even laugh. There are 5 of us grieving, all differently, at different times, in different ways. 

My thoughts are jumbled. Maybe even though they are humbled they need to come out. They need to be shared. 

I wish I could hold him one more time. While I am holding him I want my mom to hold me. 

3 weeks ago

Three weeks ago today we were driving home from Chicago. We had gone there for Michala's Aicardi conference. Since before that trip I haven't journaled at all. I had plans to journal about the trip once we got home. All the fun moments, all the hugs & love from our wonderful Aicardi family. The fun Marlee Anne, Grace & I had at Six Flags Great America. All that was clouded by our 6 year old son, Abe passing away. 

On the trip there and home he did wonderful. He will often get fussy with longs rides in his car seat but not this time. He had Marlee Anne on one side & Grace on the other. He would laugh out loud, smile & just really enjoyed the trip. He even got us with some real good poopy diapers. I remember so clearly when Grace started to watch Frozen. I had just finished feeding him & he looked over at her computer screen as if approving of her movie choice. 

When we got to Grace's house to let her out around 1:30 AM I reached back to pull her duffle bag out. When I did I noticed Abe's mouth was blue. My heart stopped. He often has seizures where that happens & had seizures all day just like every other day. I got back there to him & he wasn't breathing. I told Mike Abe wasn't breathing & I started getting him out of his car seat. Mike told Grace to call 911. Now as I type this for the first time it's like a horrible nightmare. Did all this really happen. 

Mike took him inside & we started CPR on him. Soon the fire, police & EMT were there working on him. It was like an out of body experience watching them & feeling deep in my heart he was already gone. My head was cloudy. My thoughts went to why, what happened, what could I or should I have done different, why him, why now, why God? Those questions still haven't been answered. 

Riding to the hospital in the ambulance with Abe in the back felt different this time. There was a disconnect. A longing for my son but knowing in my heart he wasn't back there. 

Once Mike got to the hospital the doctor came & told us Abe didn't make it. Keith brought Marlee Anne over to the hospital. I was thinking it could have happened in Chicago or on the way home but it was once we got to Covington, to Kim & Keith's. No rushing to call around to get someone to stay with Mary Elizabeth & Michala. Just everything was right except that this was my son that died. My son that I would no longer hold, touch, kiss, talk to & snuggle with. I don't understand. 

The next few days were a blur. I was there for his service, saw people, hugged people but still in this fog. Some say it's protection to help you get through those first few days. 

Friday after his service on Thursday everything went back to normal for others. The world went on while I was left to figure out where I fit in this world. I still had my rock and my 3 girls but a huge part of me was gone. Simple things like breathing were no longer simple. Every little thing takes such an incredible amount of effort. 

The incredible journey I didn't choose

As we begin our 12 hour journey home I think back on the past few days & wonder where the time went. What a whirlwind. 

It begin with a very uneventful 12 trip from Georgia to Chicago. Some fishing for dad, Six Flags for Marlee Anne, Grace & I while Mary Elizabeth, Michala & Abe rested up from the trip. Not by themselves of course but with dad & I swapping off. You know to help keep some balance in our lives. 

The anticipation of seeing old friends, meeting knew ones, loving on precious girls & being in awe of some of the most amazing siblings & parents in the world. The spirits of these people shine. 

I have to say I was sad for the families that wouldn't be there this year. Some that I have come to rely on heavily through the years. Some that are so dear to our family. 

Without the Aicardi Syndrome Foundation this conference would not take place every other year. Without a very hard working & dedicated conference committee this weekend wouldn't have been as wonderful as it was. From the rooms, to the meals, to the resort, the classes, childcare, the dance, entertainment, the raffles, the slide show, the speakers. I hope each of you involved in making this weekend possible felt appreciated & were thanked for all your hard work. I know it took precious time away from your families for 2 years & more. Thank you from our family to your families. 

There were so many families I didn't get to talk to or meet. Just not enough time. So many precious friends I wanted to hide away in the corner with just to soak up their love to get me through 2 more years. Not enough time. Those of you I did get to love on, thank you! Thank you for refueling me to walk on. Thank you to each of you that pray for us & lift us up daily. It's truly felt. 

I hesitate to mention the specific blessing throughout the weekend because I am sure to leave something out. Please forgive me if I do. Grace making the 12 hour journey with us not only to help our family out but to help the entire time in childcare. Natalie winning a raffle & sharing it with me because she knew I wanted to win it. Hugs from moms & dads who wrap their arms around you & know that no words are needed. Their hearts know. To see Marlee Anne be a child with other siblings. For her to see the awesome siblings that are older than her that have walked this journey & turned out so incredible. For Mary Elizabeth & Abe to be awesome siblings too. For Michala to be loved on & enjoy being with her Aicardi sisters. To meet our "little sister" in person & get to love on her when everyone else wasn't. For my dear friend to take the time to teach me how to knit while I was thinking our hearts are so tightly knit together. For the laughs, the tears, the deep breathes, the prayers, reassurances, Starbucks, Culvers & all those other important things in life. To be reminded that even when we feel alone on this journey God has provided someone to be with us. 

Six Flags

I had the privilege to go to Six Flags with our church youth group. It was an awesome day! I am so incredibly thankful for the wonderful memories that were made with Marlee Anne, Grace, Samantha & all the other youth that went.

 

I rode the Dahlonega Mine Train first because it was the first ride I ever rode with my daddy. LOVED that so much!

I got to ride Goliath for the first time. Let me just say this has to be one of my most favorite Rollercoasters. Really enjoyed it. Tough to beat Superman & Batman too. 

The new water park Hurricane Harbor is really fun too. Loved Tsunami Surge. 

I loved standing in line reminiscing about the people I have stood in those lines with. It was neat to walk through the park & remember what used to be in those places, like Buford the Buzzard. Remember the recording studio where you could record yourself singing on a cassette tape? What about the Chevy Show? 

The pictures are on the camera so I will have to share those later. I wouldn't have been able to enjoy this day without some very dear family & friends helping out with the other children & making this happen. It's truly takes a village! So thankful for ours! Very thankful for a wonderful day!

Weird Animals

When Marlee Anne & I volunteered to direct VBS I was feeling wonderful. Never did I dream I would get sick during the planning stages. A great deal of prayer went into this decision. I just knew I was supposed to be doing crafts but God kept saying something else. Even though I reminded Him what was involved He kept saying direct. 

As Marlee Anne & I were choosing the VBS curriculum we immediately decided on Agent D3. Well that was until Susan told us to go to a certain website which didn't include Agent D3. We read over each one & we were to both pick our favorite 3. The one we both choice alike was Weird Animals. I thought our family definitely fits the description. 

We started right away planning and we were so excited! Things fell into place and people were getting involved. About a month and a half before VBS I got very sick. My first thought was how am I going to take care of my family. My second thought was about VBS. 

For 21 years God has been working on me about asking for help. It's still hard for me to ask for help. However I knew for VBS to happen it was going to take a lot of asking. What an incredible church we are a part of. They stepped in and got it done. The first night was amazing! I cannot wait to see what God has planned for the rest of the week. 

Being blessed

Let me preface this by saying I was born a Baptist and raised a Baptist. One of my best friends was Methodist and I enjoyed going to church with her, especially MYF. 

When Marlee Anne asked her dad & I if we could start going back to church, how could we say no. She was thankfully unaware of the trials we had faced trying to find a place where we fit and that was accepting and understanding of our unique situation. With a huge smile on her face, when we asked her where she wanted to visit, she said Starrsville Methodist. My first thought was it can't hurt to visit because I knew God wasn't leading us to this church even though we had been praying for years for Him to lead us to the right church. The one where He wanted us to serve. It couldn't be this one because it was Methodist. What do they even believe? It's a small church. Would there be a place for us to serve? We can't just attend church and not serve. 

To give a little history our dear friend Kendra graciously took Marlee Anne to Starrsville's Vacation Bible School every year. The first night she came home talking 90 miles a minute about how it went. The first thing she said was I have a wonderful teacher. Her name is Miss Jane. Miss Jane who we asked. She didn't know but would be sure to find out. The next night she came in to tell her daddy that Miss Jane was his teacher when he was younger. It was Mrs. Jane Anderson. Each night this child's heart was filled more and more. We were so thankful to Kendra and the dear people of this church. Never underestimate the impact of your VBS. 

So years later impacted by her Vacation Bible School experiences Marlee Anne requested to visit Starrsville first. We decided I would go with her and we would leave everyone else at home. Why overwhelm these dear people? Well the pastor was a female. Yes you Baptist friends on mine that's a lady pastor. My only personal knowledge of a female pastor was Royeese Stowe. I think she is wonderful so why not give this pastor the benefit of the doubt. The people of this small church with a big heart were indeed that. They were so very welcoming. 

On the way to Henderson's to pick up lunch after church I thought, that would be a plus. As we were driving along talking about the morning I asked Marlee Anne where she would like to visit next. She said I feel like God wants me there. That's where I would like to be. Well I didn't say a word out loud. I did say to God, here? You want us here? I knew I had a peace about it but continued to ask God if He was sure. I said God how can you use me here? How can I bless others? 

From that day since He has reminded me it's not always about blessing others. It's ok to be blessed. Boy have we been blessed. 

Last night I had the privilege to have dinner with some of the most wonderful women I know from this wonderful church we call home. They bless my soul more than they will ever know. Funny thing is that female pastor is still there too blessing me daily. 

When we pray for direction and God lights the way it's probably best to just follow Him even when we are not sure what's ahead. I pray that as you are blessing others you are also being blessed! 

Happy 2014!

Thinking of all the amazing possibilities that lie ahead in 2014 but still there is a cloud looming overhead that it will all be done without my mom being here. I miss her so much! The other day I caught myself at night realizing I had gone all day without crying. Somedays I feel such an incredible peace just like I know it should be. I catch myself being worried that a memory is going to catch me off guard & knock me down. Still I am so incredibly thankful for those memories!

Mike & I have been praying about some changes God is leading us towards in our life. We are looking forward to those challenges & working towards a better life. Being in God's will is always such a blessing even though we know the enemy will work a little harder. So very thankful for all the blessings God bestowed upon us in 2013. 

As we reflect on 2013 with our family & friends there are things I would change but that's all in the past. This year I will use those things as a reminder of the person I should be & truly want to be. I see the blessings that were so unexpected & so very welcomed. 

I love looking back on the year to see the struggles that I thought we wouldn't make it through at the time but looking back see how clearly it was all part of God's perfect plan. Maybe just maybe I will remember & cling to that in the struggles of 2014. 

Each night my journal of 2013 includes a blessing that I was & am so very thankful for. So many of those blessings include ya'll. You may not even have known you were a blessing to me that day. I am sorry I didn't thank you at the time. 

Thank you to each of you for touching my life. My prayer for each of you is if you don't have a personal relationship with Jesus Christ you will find Him right there with you. I pray for each of you that have a personal relationship with Him to grow daily in that walk. May you be blessed by those around you & may you be a blessing to them. May you overlook faults & downfalls in others, show kindness & love to those that you think deserve it the least. 

For my precious husband, my rock, I pray that he continues to put God first & me second. I pray that he doesn't compromise his values for the betterment of himself whether in work or with friends. I pray he knows how much I love & admire him always. 

My prayer for our children is health & love. I pray that Mary Elizabeth has a healthy 2014 filled with lots of smiles. I pray for less seizures for Michala & to better adjust to teenage life. I pray for health & happiness for Marlee Anne. I pray she has joy, lots of laughs & continues to grow in her walk with Christ. For my Abe I pray for less seizures & more laughs. I pray for his & Mary Elizabeth's lungs to be strong & healthy. For all our children I pray that they know they are loved first by God & second by a mommy & daddy who loves each other dearly & them just as much. 

My prayer for my sister, brother, nieces, nephews, aunts & cousins is that we find strength in each other to get through this year without mom. She was truly the glue that held us together. 

My prayer for myself is that I will work everyday to be the person God has created me to be. I pray that I will be open to His word as He speaks to me daily. I pray that I will be a God girl, supportive wife, loving mommy, & caring friend. I pray that my eyes & heart are always open to those around me that are in need. 

May 2014 be filled with growth, health & blessings for everyone. Happy New Year!