Saturday, August 23, 2014

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!

Tuesday, August 19, 2014

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. 

Sunday, August 17, 2014

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. 

Sunday, July 27, 2014

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. 

Thursday, July 10, 2014

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!

Tuesday, June 24, 2014

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. 

Wednesday, June 04, 2014

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!