VNS replacement

Michala had her Vagal Nerve Stimulator replaced. It's so hard to let you child go into the arms of someone else and let them be put to sleep. Going to Egleston is such a hard thing for me now after that dreaded day we walked out without Mary Elizabeth a year ago. This was our second time back there since she passed away. We had the most wonderful day surgery nurse, Michelle. Her sweet, fun and caring personality put us all at ease. Our precious PICU nurse Claire was even in recovery with Michala. Love those reminders that God always goes before us to lay it all out. Thankful for a successful and uncomplicated surgery. We are home trying to keep her pain and nausea under control. Thanks for the prayers! 

As we were trying to decide what and when do to something to honor and remember Abe I wanted to release floating lanterns. My smart husband said well I am not sure we can do that in Colorado so I called the Fire Department to check. Sure enough once again Mike was right. A sweet friend said do whatever you want to do. Go somewhere Abe would enjoy or do something together he would like. However "we" weren't together. The other part of me was in Georgia. Thankfully we had a couple of friends over and we all went to Dave & Buster's. Marlee Anne said Abe would love that and all the stuffed animals. He did love him some stuffed animals. We did some surprises along the way for others and hope it blessed them. 

A dear friend wanted to bring balloons over and my first response was no. I just didn't think I was up to it. So thankful it worked out and we got to release some balloons. 

The rest of my night was filled with love, laughter and tears with a friend I have known for two short months but it seems like we have known each other our whole lives. I love when God's work is so evident in my life. 

Thankful for the virtual hugs I got from Georgia as my heart longed to be home with ya'll and among Abe's things. 

To My Baby Boy

A year ago when God called you home my life changed forever. That day I thought I would never smile or laugh again. Somedays it's hard to breathe and it's evident to me that it is God within me breathing. 

Someone said God needed you but your daddy reminds me God didn't need you because He doesn't need any of us but He wanted you just like He wants all of us. I am thankful as I struggle to function that He still wants me. 

My memories of you Abraham Thomas make me smile. There are times when there are tears but that's because I miss you so very much. 

You are missed. Because you touched so many lives in your six years here your memory goes on. I love to talk about you. Your daddy and especially your sissy are so very good about doing that. 

My precious boy I pray that you know I love you. I miss holding you at 2:00 AM while you had a seizure. I never understood that when my friend told me that but now I do. Because of you Abe I am a better person. I look at life so differently because of you. I know how to be more patient, I forgive more

easily and I love more. I rely on God more, my faith is stronger and I am working on giving myself more grace. Thank you for making me a better me. 

Saying thank you for blessing my life for six years seems so trivial but as I think of your life and how much love was packed into six years I am so grateful. Proof once again that God knows what He is doing.  

Please give your sister, your brother, Granmama, Ging, & Uncle Tommy a hug for me. Remind them that I love them and tell them I will see them soon. Enjoy your time with Jesus while getting our mansion ready. Your daddy is still taking good care of us and reminding us how the story ends. 

I love you sweet boy,

Mommie

Wrestling with God

Wrestling with God

This was the title of Sunday's sermon. As soon as I saw it I wanted to bolt out the door. Yes there are thousands of other people there but I knew this sermon was written for me. 

As Jim began talking about we are thankful for something and know it's right BUT..... I was there. I was sucked in going through every thought. 

Yes I know Abe isn't having seizures anymore BUT I want to hold him one more time even if it's while he is having a seizure. 

Yes I know he is running around playing BUT I want to run with him. 

Yes I know he is breathing on his own BUT just one more time I want to put that oxygen back in his nose and silence that monitor beeping. 

My list goes on and on but for ya'll I will stop there. Now the battle about my sweet baby girl. 

I know Mary Elizabeth is sitting at the feet of Jesus taking it all in BUT I want her here with me. Eight months ago just three months since Abe left us she was gone. God what could I have done different? How could I have saved her? What if (very dangerous words) I had taken her to the hospital sooner? What did I miss? Why did I miss it? 

I know our days are numbered. I believe the date was already chosen BUT I still blame myself. I still question. I still ask. I still wonder. 

I know we are in the right place right now for Michala BUT I miss being together as a family. 

I am thankful Michala is getting help BUT I wish more people had this medicine. 

I know getting her off pharmaceutical medications was the right thing to do BUT when she has a seizure I wonder will she have to have them again. 

I know she is doing so much better than before cannabis oil BUT what if (that dangerous word again) that changes. 

I know Mike is a big boy BUT I worry about his traveling and the stress of providing two homes for us is causing him. 

God has blessed us with wonderful friends here BUT I miss our family and friends in GA. 

We have a wonderful church here BUT I miss those Sunday morning hugs and that southern breakfast. 

We have a nice home BUT I miss the comforts of our home. 

We are not starving BUT I miss Henderson's and all the local southern food. 

I call it a war raging but I am definitely wrestling with God. I believe Him and trust Him and I am so thankful that He is ok with me wrestling with Him. When I tire from the wrestling I am thankful to know He will be there waiting to hold me, love me and continue to carry me. 

Through the pain

In awe of God and this beautiful sky tonight. Today has been filled with searching to find understanding, peace and healing. Thankful for the constant of God even when I don't understand. Thankful for His comfort even through the pain and sadness. 

Seven months today - June 7, 2015

So many days spent at CHOA. So many of those days in the PICU. Not the way I dreamed it would go but all part of God's plan. We didn't get to attend the memorial service for the children that passed away in the PICU in 2014. Still she wasn't forgotten. They remembered her with this butterfly and sent it to us. So very thankful for the hospital staff and especially those PICU nurses that carried us through so many long days and nights. Especially on November 7, 2014. 

First week off seizure medications.

The week prior to starting cannabis oil Michala was on some very strong seizure medications that had horrible side effects. During that week she had 62 seizures that totaled 25 hours and 25 minutes. In addition to the seizure medications she also had rescue medicines to help interrupt or stop the seizure if it was too hard or lasting too long. During that week she had to have her rescue medication. The thing about those is when they stop the seizure they also knock her out. 

This is the first week Michala has been completely off pharmaceutical seizure medications. She has only had 10 seizures that lasted a total of 16 minutes. 

Words from Mike

Since I am usually the one writing I wanted to share some of Mike's most recent words. Very thankful for the man he is. I am blessed to see God working in him. 

Yesterday my family and I went to see Pixar’s new movie “Inside Out.” Great movie. We all had fun. Michala laughed at all the appropriate times. I was blown away by her excitement. She made it through most of the movie until her afternoon nap time came and she went to sleep. Afterwards, she and I were out in the lobby waiting on Kelli and Marlee Anne. While waiting, we were approached by this woman and her children and this is what she said to me,” I am truly thankful that I live in a country where we have the freedom for everyone to participate in everyday life, however I am truly saddened by the fact that there were people who sat around me and said such disparaging things about your daughter and you as a parent for bringing her to the movie in the first place. Tears began to well up in her eyes and she could say no more. What did I say? What I have said for as long as I have been a parent. “That’s ok mam, I have seen the looks and have heard the whispers for over twenty- one years and I am thankful for every single day, every hour, every minute, and every single second, if those people knew how much “I have been loved by all my children,” they would have come to my house with a gun to take it from me. I really have been truly and wonderfully loved by our amazing children. There are no words. As always, most people only see the outside and not the inside. Did I get mad? No. There was no way that these people knew that Michala had endured cancer, lost her leg and almost her life, and that every day for fifteen straight years she had multiple seizures per day and that she had recently lost her brother and sister. The majority of people are not that perceptive. Sadly some people are only concerned about their self. What did pop into my mind was recent messages from our church in Colorado. Lately, I have been trying to memorize the Sermon on the Mount and so far I have completely memorized chapter six.Long way to go uh? My hopes are that God will etch on my heart, compassion, fairness and most of all a true love for others. The one thing the study has done is make me realize what a sinner I truly am. Over the years, and certainly when I was younger I have been guilty of the quick glance at people and making unfounded judgments about who and what they are. What did I know? How did I know what they have endured? We all have experienced life’s storms, and challenges. Haven’t we? As the saying goes,” Do not judge a person’s life until you have walked a mile in their shoes, or in Michala’s case shoe.” I realize how fortunate I am and that most people will never be loved as I have been loved, at least not until they are in the arms of Jesus. I am so grateful Lord that instead of allowing me to harbor anger you showed me that it is truly better to forgive and love those who do not know a life well lived when they see it. Michala you are a Daddy's Dream come true and I love you so very much. Matthew chapters 5, 6 & 7. 

Leadville Marathon

The Leadville Marathon was brutal.

No doubt about it, I truly bit off more than I could handle, way more than I could handle. I will say in my defense I did not leave the course until the cutoff. With that said, I had a truly great time. Disappointed sure, but I had a great experience. The scenery was spectacular. Running past abandoned mines with their scree fields and down remote trails was amazing. This marathon was more than advertised, it was either straight up or straight down. What really was difficult for me was the trails were covered in baseball and softball sized rock- no pea gravel. Mentally draining, I don't know how many times I had to catch myself. The rocks were so tough that they blew out my jel- cell on my shoes. Sorry New Balance you are not tougher than Leadville.
Mosquito Pass was my breaking point. The highest point on the course 13,200'. By the time I got close to the summit I could not quit coughing to the point I could not take in air. I was struggling. I was hacking as if I had pneumonia. Forward progress was by baby steps. Every time I took a step with my left foot I said Abe and every time I took a step with my right foot I said Mary. Maybe that's what triggered a very kind woman to turn me around and help me to the aid station and a visit to the paramedics. By this time I had a headache as well. Everything checked out okay, except for my pride which we all know comes before the fall. The trail up Mosquito Pass is serious stuff. Marlee Anne and I have found out the hard way that one slip could be fatal on some of the "easy trails" we have hiked in Boulder. People were running up and down Mosquito Pass - crazy stuff. Super athletes. Another indicator of the remoteness of the race course was that I had to hike down 2 1/2 miles to get a ride down off the mountain after my visit to the ambulance. So physically, I could not make it to the finish line and by the time I reached the next aid station I had missed the cutoff time.I am wondering now if I could have finished even if I had all day and not the 8 1/2 hours allowed by the race. Prior to the race I logged 40 to 60 miles a week and it was still not enough training.I am a little disappointed that I didn't finish. I feel old. You know what,I am old. 
Anyway here is why I tried the Leadville Marathon. Since the events of last year I have struggled with having a quite time with no distractions to readjust my life without my little man and my sunshine. Work, moving to Colorado, lobbying for HB-1,local politics, work, commuting to Colorado, repainting the entire interior of the house, did I mention work. My life has been a blur.
Maybe that was good, maybe not. Our Pastor in Colorado several months ago had asked us to meditate on God for just ten minutes per day and I faithfully fulfilled that goal, however it never failed that I could not make it ten minutes focusing on God without the world creeping into my thoughts. I am ashamed. I needed some true alone time to remember my children.Enter Leadville- I knew I would be without phone, Internet and out in the wilderness, but more importantly I would be under physical stress and my thoughts would be simple. Left foot- Abe, right foot - Mary, and so it went all 16.1 miles. A lot of tears were left on the trails of Leadville. A lot of great memories recalled and relived. In the end no medal, but I got more than my money's worth- Thank you Leadville.
Would I do it again. Absolutely Not! I would encourage anyone to try it once. I promise, you will not be disappointed.
Special thanks to James and Emily Mills for my great race jersey. So many positive compliments.

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!!!