Saturday, February 13, 2016

Do it for Hawk!

Abe's wheelchair holds so many wonderful memories but no longer holds him. We were happy to give it to Hawk. It's been covered with so many prayers by so many over the years. Passing those prayers along with many more over to Hawk. Love he and his mommy dearly. #doitforhawk

8 years ago

I was preparing for the hospital 8 years ago today. I was to be induced the next day. I was nervous about what lied ahead of us but was so excited to meet my baby boy. A boy! Mom said they steal your heart. She said there is nothing like a baby boy. 

The day was spent making sure everything was in place. Everything packed, someone to keep Mary Elizabeth and Michala, all their meds in place and everything in order. Well as much as it could be. 

Marlee Anne was coming with us and she was so excited. I think she was more excited than anyone. All she talked about was her little brother. 

We knew he had clubfeet and already had things in place for that. He and I had been covered in prayer so we were ready to go. 

Thursday, December 24, 2015

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! 

Tuesday, July 28, 2015

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,

Tuesday, July 21, 2015

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. 

Monday, July 13, 2015

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. 

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.