Leadville Marathon

Tomorrow Mike will be running The Leadville Marathon. Leadville is the highest city in the United States. He will begin his race at 10,000 feet and climb to 13,000 feet in elevation. Just for  point of reference Covington is 695 feet. He will be running with 30% less oxygen. I think that's what got him into this situation to begin with. Lack of oxygen. 

I am beyond proud of him. He began training when we moved out here and will be doing this in memory of Mary Elizabeth and Abe to honor their incredible lives. The challenges he will face tomorrow I have no doubt he will push through because he witnessed their lives first hand. 

They fought the good fight, they finished the race and they kept the faith. 2 Timothy 4:7. I know their daddy will too. 

I am attaching a picture of the tshirt he will be wearing that was made by our dear friends James and Emily Mills. Michala, Marlee Anne and I were also surprised with one to wear tomorrow in support of Mike and in honor of Mary Elizabeth and Abe. 

So much heartbreak!

What a gorgeous day for so much heart break. In the middle of the night we got word that our precious friend Amy Costa went home to be with Jesus, when her sweet sister Laurie text us. 

Just one day shy of being 7 months after Mary Elizabeth passed away. I struggle with this so much. I know where she is. I can easily picture the perfect soul she has always had in her new body. She is able to do things now she couldn't do in her earthly body. She's not in pain and no  more seizures. All that sounds so good but my heart hurts deeply. 

I selfishly hurt for myself as well as her family. I know that mommy heart pain now and I so wish I could take it from my dear friend Maryellen. I know the sibling lose pain and so with I could take it from my wonderful friend Laurie as she misses her sister so much. 

Maryellen has carried me through so many days of this Aicardi journey. I give her credit for saving Michala's life with her bold self. My prayer is to be supportive and loving to her and her family during this time and beyond. 

We love you Amy! We will miss you but will see you soon!

Disney, crafting & friends!

Thr perfect combination of wonderful! Today was spent with some of our new friends, Heidi, Ruby & Ashley, as we made crafts for Relay for Life in Erie, CO. 

We made "Do you want to build a snowman" bags filled with marshmallows, pretzels & chocolate chips. We made domino magnets & chocolate covered pretzels. We listened to Disney tunes the whole day, shared memories and got to know each other better. 

Marlee Anne got to FaceTime with Mackenzie & Kendra. I couldn't even look at Kendra on the phone because I was crying. Missing our dear friends. 

Trying to remember God has us here right now, right here for a reason. We are blessed with wonderful neighbors here that we have quickly bonded with. So thankful! 

Here are pictures of a few of our creations. 

Oh yes and Tony was with us too helping out. Well ok he was supervising. 

Six months on cannabis oil!

First off my apologies for not updating before now. My list of excuses would take more time than I am sure you want to spend reading. 

Six months ago Michala took her first dose of medical cannabis oil. Like with each thing and area of our lives we placed this in God's hands. We tried to plan it out the best we could with a lot of help from those God had placed in our path. Doors closed that we were saddened about while others opened that today we are forever thankful for. Because of God's perfect plan Michala took her first dose of Haleigh's Hope six months ago. 

Let me give a little history here. All cannabis oils are not made equally. As Mike describes it it's not like going into Walmart here purchasing Tylenol then going to Walmart in Georgia and purchasing Tylenol. All cannabis oils made from different growers are different. The plants are not the same. They do not contain the same amount of CBD/THC ratio. The lab reports are not the same and there are many more differences. Just because one cannabis oil works for one child with epilepsy doesn't mean it will work for another child. When we got to Colorado we were blessed to be able to get Haleigh's Hope for Michala. It has been her Miracle drug. We are so blessed to have found the right one for her on the first try. I know I have said that in the past about a pharma also but this is a Miracle drug without the nasty side effects. 

Before starting cannabis oil Michala had seizures every single day for 15 years. She had a year that she was seizure free while she was on chemotherapy for her cancer. Before that year she had seizures pretty much everyday. Since starting cannabis oil Michala has had 93 seizure free days! Her longest stretch was 6 consecutive days without a seizure. We know she would have had more seizure free days if we were not weaning her from some of her pharmaceutical seizure medicines. Once we get her completely off those it will be neat to see how many seizure free days she has. 

Besides seizure free days we have seen interactions we have never seen before. We have seen alertness, awareness, non-seizure laughs and smiles that are appropriate. Hugs that we have only dreamed of. Less aggressiveness and our sweet wild thing we knew was in there. 

We are so thankful to Journey of Hope for helping us get here. We are incredibly thankful to Flowering Hope for Haleigh's Hope. We are forever grateful to Jason Cranford for the help on this journey. The list is incredibly long for the others we should mention but I am sure to leave someone out. Ya'll know who you are. Thank you!!! Thank you to each of you who continue to pray for us and support us through this. 

Much love & thanks!

That date, that day - 6 months

Yesterday we celebrated our sweet girls 13th birthday. In two separate states, 1400 miles away, we celebrated her life. Last night I laid down with a thankful heart but still a very heavy heart that I have each night. When my eyes opened my heart was still incredibly heavy. Why Lord? The calendar - what's the date. The 7th. That dreaded day, that dreaded number. What month is it? How many months has it been. I begin counting. 6 it has been 6 months. After Abe passed away I didn't think I could ever hurt that way and especially not so soon. My heart had not begun to heal. I had not begun to process what was happening. I had not stopped blaming myself for Abe's death when God called Mary Elizabeth home and I was now blaming myself for two of my children's death. What if? What if I had heard Abe? What if I had taken Mary Elizabeth to the hospital sooner? I know in my heart where these thoughts come from but there is a war raging inside me that I battle every single morning. Before I even have time to put my armor on the enemy is attacking. I don't want to live my life like this. Self absorbed, trying my best just to get through the day. I want to be who God created me to be. I want to carry out my children's memory and enjoy this life with my husband and two beautiful daughters I still have here. 

Special Olympics Grand Marshall

Riding in the Special Olympics parade and being the Grand Marshall means a lot to our family. When LaTrelle called to tell us that they wanted to recognize our family and do Special Olympics in honor of Mary Elizabeth and Abe the tears flowed. You know the gasping breaths where you get bits and pieces of sounds out that don't really make any sense. She knew how much it meant to us without us even saying anything. 

She as well as us was hoping we would all be back in time for it. Mike represented our family even though it was hard. I love that he is a person of detail and that he shared what went on and all the excitement from everyone. 

One of my favorite things was Christopher's excitement each time he saw Mike and giving him the peace sign. The other was the huge heart of LaTrelle and all the love she has for each one of the students. 

So thankful and blessed that our town remembered Mary Elizabeth and Abe in such a special way. 

On the move!

As I pack up to move to our second "home" in CO I pray the next move is back to our HOME in GA. That would mean in 3 months some things really have to change. At first I think no way, then I think back on this past year to the handful of families, a strong little warrior, the mommy lobby, those precious daddies, the fearless leader, along with strong legislative supporters under the gold dome that did more in GA than I thought could happen. I think back to what we had to do to get to CO, who we lost in the planning stages, the man that was waiting to give Michala some liquid gold, the change the first dose made, the church family God provided us with, the GA friends He surrounded us with, the CO peeps we have fallen in love with and this beautiful state. Why put limits on God? I know if it's His will it can be done in 3 months. If not He will open the door for another place and He will continue to carry us on this journey. 

God's Hand

When we moved to Colorado I was beyond scared. I mean I knew without a doubt God was leading us here but it was such a huge leap of faith. Especially for this Georgia girl who had never lived anywhere other than GA, except for Iowa for 7 weeks. Would the cannabis oil work, would I be able to drive in the snow, would we find a church, would we make friends? The biggest was how could I do this without two of my precious babies? Also my husband not being with us everyday? So thankful God continues to open doors for us and shows us His hand through it all. I am going through a grief workshop at church and it's so hard. I know that it is and will continue to help. As we begin looking for a new home we are praying God will show us the way. 

Helping others

When we first came here the amount of homeless people were very evident. Marlee Anne wanted to help them all. If it were up to her we would have a house full of people living with us. We told her we would pray about how God wanted us to help them. 

When Abe passed away things within me weren't the same. The things I once cared about I no longer cared for. When Mary Elizabeth passed away even more of my passions died. One of those things that so many people have been praying about was crafting. I just didn't have the desire to craft. 

The night before Abe passed away my dear friend gave me a refresher course to knitting. I first learned to knit from the NICU Knitters who are the nurses in the NICU at Egleston. They taught me while Abe was in the NICU. After Abe passed away I could not bring myself to knit again. I could not even open the bag of yarn and needles that my friend Kati had given me. Kati continued to encourage me to try to knit again. You see Kati just celebrated the one year anniversary of her precious daughter, June's death. She  knows where I am and has been such a huge encouragement. 

I finally finished my first scarf just the other day. Since then I have made 4 more. I have decided this is the perfect thing to donate to the homeless shelter. I am going to do this in conjunction with Marlee Anne's UGA Miracle fundraising. If you would like to sponsor a scarf it will go to the homeless shelter in your honor and in memory of Abe and Mary Elizabeth. The money will go to Children's Healthcare of Atlanta. 

You can donate at the link below. Please make sure to make a note that you would like a scarf to be donated to the homeless shelter. Thank you for helping someone stay warm, helping children and remembering Abe & Mary Elizabeth. 

For the Love of Abe and the Joy of Mary Elizabeth. http://www.helpmakemiracles.org/participant/Abe

Great day!

Friday we increased Michala's cannabis oil. It's midnight in GA so I can share this and call it a day. Michala had NO - yes that's zero startle seizures. That's the first time that she has ever been a whole day without any since she started having them. We almost went an entire day seizure free but at 4:00 she had a 6 minute seizure. That's what I would call an awesome day! Thank ya'll for your continued prayers!

Cold in Georgia

So it seems Mike is being blamed for bringing the cold back to Georgia from Colorado. I for one am thankful for the blue skies, sunshine and warmth today in Colorado. I think the cold in Georgia is so ya'll will sympathize with me when I am whining about being cold. This too shall pass right? I have to say being in Colorado makes me more thankful for things at home that I too often take for granted. Praying God continues to mold us as He uses us where He has us. 

We adjusted Michala's cannabis oil recently to see how it would help. With the other formula she was still having wonderful cognitive improvements, better seizure control but still some break through seizures. Right now we are seeing some frustration and agitation as her body is adjusting to something new. Not at all unusual for her or with any type of medication change. We have gone back to a lower dose to see how her body responds. She still has plenty of room for adjustment if needed. We are hoping to see more and more improvement with this in the next few days as her body adjust and the medicine gets in her system. 

I am not sure how much I have shared about the specifics of what she is now doing on the cannabis oil. We have always talked to Michala through everything we have done, asked her questions even if she wasn't able to respond and had conversations with her. 

As we dress her we tell her what we are doing. When we put her shirt on her she would try to help put her arms in. Now more times than not when we get her shirt over her head she puts her arms in all by herself. She has never used her right arm much and had trouble getting it in her shirt. Now it's like she realizes she has a right arm and uses it. She even reached for her cup twice with her right hand the other day. Also when dressing her we tell her we are going to put deodorant on her. We help her lift her arms so we can apply it. Now when she sees the deodorant in our hand she will raise her arms. She sees it, the message gets to her brain and her brain reacts correctly. 

We have read and heard stories of how cannabis oil heals our brains and can help development. To see it actually happen is incredible. 

We have always given Michala hugs, love &'kisses and told her what we were doing. Now she does it on her own. Every morning when Marlee Anne wakes up she sits down in front of Michala and Michala wraps her arms around her, hugs her and gives her a kiss. Sometimes Marlee Anne will say squeeze me tight (this is something Granmama always said to us) and Michala will squeeze her. 

I am sure there are things I am leaving out. Oh yes! Laughing appropriately. Whenever we are watching something or Marlee Anne is telling a joke (if it's funny) Michala will laugh at just the right times even before one of us laugh. 

God is allowing us to see things in Michala that confirm we are doing the right thing. Days get long being away from home. We miss our family & friends. We miss our church. We miss our home. The saying "home is where your heart is" is so very true because my heart is in Georgia. No matter how hard I try, I think I will always be a Georgia girl. 

We try to stay busy so we don't dwell on Mary Elizabeth & Abe not being with us. Thankful Colorado has a lot of things for us to see. Thankfully they are free because two households in different states is challenging. Once again God provides through amazing people. So blessed!

We will be thankful to come home safely and legally with the cannabis oil when HB1 passes and growing has begun so that we can get the right cannabis oil that will help Michala, like we are getting here in Colorado. We will be even more thankful when children we know can reap the benefits we are seeing in Michala, that they so richly deserve. It's hard to know that this Miracle drug that can help so many is not readily available. It's hard to read about one of our friends suffering through seizures when relief is out there. We realize how blessed we are to be able to be here for Michala. We are thankful. 

Please continue to pray with us that Georgia does the right thing this year to bring all the families home and help so many other Georgians. Please reach out to your state representatives and senators to gain their support. 

Thank you Representative Allen Peake for your tireless efforts, incredibly hard work and huge amounts of love you have put into HB1. We are forever grateful to you, Betsy and Journey of Hope for changing Michala's life and giving her so very much! We love ya'll!!! 

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!