Sunday, July 05, 2015

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. 

Sunday, June 21, 2015

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.

Friday, June 19, 2015

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. 


Saturday, June 06, 2015

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!

Thursday, June 04, 2015

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. 

Monday, June 01, 2015

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!


Thursday, May 07, 2015

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.