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. 

Tuesday, April 28, 2015

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. 


Thursday, April 23, 2015

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. 

Sunday, March 22, 2015

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. 

Thursday, January 22, 2015

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






Saturday, January 17, 2015

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!

Thursday, January 08, 2015

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!!!