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!

Weird Animals

When Marlee Anne & I volunteered to direct VBS I was feeling wonderful. Never did I dream I would get sick during the planning stages. A great deal of prayer went into this decision. I just knew I was supposed to be doing crafts but God kept saying something else. Even though I reminded Him what was involved He kept saying direct. 

As Marlee Anne & I were choosing the VBS curriculum we immediately decided on Agent D3. Well that was until Susan told us to go to a certain website which didn't include Agent D3. We read over each one & we were to both pick our favorite 3. The one we both choice alike was Weird Animals. I thought our family definitely fits the description. 

We started right away planning and we were so excited! Things fell into place and people were getting involved. About a month and a half before VBS I got very sick. My first thought was how am I going to take care of my family. My second thought was about VBS. 

For 21 years God has been working on me about asking for help. It's still hard for me to ask for help. However I knew for VBS to happen it was going to take a lot of asking. What an incredible church we are a part of. They stepped in and got it done. The first night was amazing! I cannot wait to see what God has planned for the rest of the week. 

Being blessed

Let me preface this by saying I was born a Baptist and raised a Baptist. One of my best friends was Methodist and I enjoyed going to church with her, especially MYF. 

When Marlee Anne asked her dad & I if we could start going back to church, how could we say no. She was thankfully unaware of the trials we had faced trying to find a place where we fit and that was accepting and understanding of our unique situation. With a huge smile on her face, when we asked her where she wanted to visit, she said Starrsville Methodist. My first thought was it can't hurt to visit because I knew God wasn't leading us to this church even though we had been praying for years for Him to lead us to the right church. The one where He wanted us to serve. It couldn't be this one because it was Methodist. What do they even believe? It's a small church. Would there be a place for us to serve? We can't just attend church and not serve. 

To give a little history our dear friend Kendra graciously took Marlee Anne to Starrsville's Vacation Bible School every year. The first night she came home talking 90 miles a minute about how it went. The first thing she said was I have a wonderful teacher. Her name is Miss Jane. Miss Jane who we asked. She didn't know but would be sure to find out. The next night she came in to tell her daddy that Miss Jane was his teacher when he was younger. It was Mrs. Jane Anderson. Each night this child's heart was filled more and more. We were so thankful to Kendra and the dear people of this church. Never underestimate the impact of your VBS. 

So years later impacted by her Vacation Bible School experiences Marlee Anne requested to visit Starrsville first. We decided I would go with her and we would leave everyone else at home. Why overwhelm these dear people? Well the pastor was a female. Yes you Baptist friends on mine that's a lady pastor. My only personal knowledge of a female pastor was Royeese Stowe. I think she is wonderful so why not give this pastor the benefit of the doubt. The people of this small church with a big heart were indeed that. They were so very welcoming. 

On the way to Henderson's to pick up lunch after church I thought, that would be a plus. As we were driving along talking about the morning I asked Marlee Anne where she would like to visit next. She said I feel like God wants me there. That's where I would like to be. Well I didn't say a word out loud. I did say to God, here? You want us here? I knew I had a peace about it but continued to ask God if He was sure. I said God how can you use me here? How can I bless others? 

From that day since He has reminded me it's not always about blessing others. It's ok to be blessed. Boy have we been blessed. 

Last night I had the privilege to have dinner with some of the most wonderful women I know from this wonderful church we call home. They bless my soul more than they will ever know. Funny thing is that female pastor is still there too blessing me daily. 

When we pray for direction and God lights the way it's probably best to just follow Him even when we are not sure what's ahead. I pray that as you are blessing others you are also being blessed! 

Happy 2014!

Thinking of all the amazing possibilities that lie ahead in 2014 but still there is a cloud looming overhead that it will all be done without my mom being here. I miss her so much! The other day I caught myself at night realizing I had gone all day without crying. Somedays I feel such an incredible peace just like I know it should be. I catch myself being worried that a memory is going to catch me off guard & knock me down. Still I am so incredibly thankful for those memories!

Mike & I have been praying about some changes God is leading us towards in our life. We are looking forward to those challenges & working towards a better life. Being in God's will is always such a blessing even though we know the enemy will work a little harder. So very thankful for all the blessings God bestowed upon us in 2013. 

As we reflect on 2013 with our family & friends there are things I would change but that's all in the past. This year I will use those things as a reminder of the person I should be & truly want to be. I see the blessings that were so unexpected & so very welcomed. 

I love looking back on the year to see the struggles that I thought we wouldn't make it through at the time but looking back see how clearly it was all part of God's perfect plan. Maybe just maybe I will remember & cling to that in the struggles of 2014. 

Each night my journal of 2013 includes a blessing that I was & am so very thankful for. So many of those blessings include ya'll. You may not even have known you were a blessing to me that day. I am sorry I didn't thank you at the time. 

Thank you to each of you for touching my life. My prayer for each of you is if you don't have a personal relationship with Jesus Christ you will find Him right there with you. I pray for each of you that have a personal relationship with Him to grow daily in that walk. May you be blessed by those around you & may you be a blessing to them. May you overlook faults & downfalls in others, show kindness & love to those that you think deserve it the least. 

For my precious husband, my rock, I pray that he continues to put God first & me second. I pray that he doesn't compromise his values for the betterment of himself whether in work or with friends. I pray he knows how much I love & admire him always. 

My prayer for our children is health & love. I pray that Mary Elizabeth has a healthy 2014 filled with lots of smiles. I pray for less seizures for Michala & to better adjust to teenage life. I pray for health & happiness for Marlee Anne. I pray she has joy, lots of laughs & continues to grow in her walk with Christ. For my Abe I pray for less seizures & more laughs. I pray for his & Mary Elizabeth's lungs to be strong & healthy. For all our children I pray that they know they are loved first by God & second by a mommy & daddy who loves each other dearly & them just as much. 

My prayer for my sister, brother, nieces, nephews, aunts & cousins is that we find strength in each other to get through this year without mom. She was truly the glue that held us together. 

My prayer for myself is that I will work everyday to be the person God has created me to be. I pray that I will be open to His word as He speaks to me daily. I pray that I will be a God girl, supportive wife, loving mommy, & caring friend. I pray that my eyes & heart are always open to those around me that are in need. 

May 2014 be filled with growth, health & blessings for everyone. Happy New Year!

A true act of love.

Those that know me well know a few things that are hard for me. Among those are asking for help & leaving my children. Well a precious friend of mine decided she was going to surprise me with time away with Mike. Mike told her he couldn't surprise me & needed to talk to me about it. He knows my heart so well. I knew right away a lot of prayer went into this because I had such a peace about it when he told me. 

When we walked into her lake house music was playing & there were gorgeous flowers on the table for me. There was a wonderful peace & calm in their home. We had a wonderful time together.

 We went to Gabby's at The Ritz Carlton to eat. Our waiter was absolutely great. Then we walked & saw the lights. It was absolutely beautiful. We were fine until it started getting dark & rainy. I got quiet & Mike knew. As the tears began he said to check on them. As I was waiting for a reply he said I am fine with going home. Very soon I got a text that everyone was doing great. 

As we drove back to the lake house Mike said do you just want to get our clothes & go home. I was very torn & wasn't sure. When we got back he made a fire & I made some coffee. It began to flood outside. It was only about 7 & I was so sleepy. After a nap it was 9 & once again I was anxious & missing our babies. Perfect timing for a text saying everyone was fine. 

I so enjoyed the time with Mike. When you get caught up with life it's nice to know that we still connect as a couple. It was also confirmation that I am where God wants me to be. Very happy & content with being the wife & mommie God created me to be. 

Why this time of year?

Someone asked me why I don't like this time of year. It probably started the first Thanksgiving & Christmas without my daddy. I thought that was the hardest Thanksgiving & Christmas I ever experienced. 

Then Mary Elizabeth's first Christmas when it wasn't all I ever dreamed of. I wanted her to be sitting up & playing with her toys. As those years went by & people asked what to get her I had no answer. Ya'll know those crushing questions. The ones when family & friends mean well but it breaks your heart. The realization of no gift being right or working for her. Eventually she got diapers for Christmas because the toys she could enjoy were too expensive. 

There is the Christmas we spent without me being pregnant because we lost our little boy during the pregnancy. We were still grieving as the world continued on. My heart still longs for him this day. 

Michala comes along. In November when she was 3 weeks old she had her first seizure. Then she was diagnosed with infantile spasms. My heart wasn't very thankful. On December 21st she was diagnosed with Aicardi Syndrome. We were also hit by an on coming car that same night. 

Right after Christmas we began preparing to be admitted to University of Alabama at Birmingham hospital for Michala to start the vigabatrin study program. Not the way we wanted to start the new year. Our first night there I was in the hospital with Michala while Mike & Mary Elizabeth were at the Ronald McDonald House. The next morning the abortion clinic was bomb just a couple of blocks for RM house. It was on lockdown so they couldn't come to the hospital. 

The next November Michala had her first

surgery on her foot at Boston Children's Hospital. The next week we were told she had stage 4 angiosarcoma cancer. That week her second surgery on her foot was done at Egleston Children's Hospital to try to get a clear margine. In December we were given the choice of her life or her leg. We chose her life & in December her leg was amputated. In January her chemotherapy was started with not much hope from the doctors that she would make it. 

The next Thanksgiving & Christmas we spent without my brother Tommy. 

Marlee Anne's first Thanksgiving & Christmas was wonderful but those other memories continued to lurk. As she got older she wanted to get different things for Mary Elizabeth & Michala. Soon she would realize their abilities were different. 

Abe came along & those Christmas dreams were crushed yet again. This year we have Thanksgiving & Christmas without mom. Probably the hardest one ever!

I want to end by saying that our children not being able to run see what Santa brought on Christmas morning gave us even more of the real meaning of Christmas. We have always given them 3 gifts for Christmas representing the 3 gifts the wise men gave to Jesus. They help keep us focused. I try my best not to get in my holiday mood but every now & then it hits. That's why God blessed us with other Mito, Aicardi & "C" families to help us get through this. Also family & friends that have celebrated Thanksgiving & Christmas without a loved one. 

Mom's funeral

I came here to post a recording of Mike speaking at mom's funeral & I saw my last blog post. I will fill in details later on when my heart is ready. This recording was made by a dear friend of ours.

My mom

Ya'll know I am an open book, easily share my heart & a firm believer in the power of prayer. Not everyone agrees with that so I don't always share the ups & downs about mom. For two weeks those prayers carried us thorough Abe's hospital stay. Our faith was tested along with the strength of our family. God prevailed. We need those prayers now please. 

While we were there I struggled with wanting & needing to be home with my family especially my mom. I don't understand God's plan & I try not to figure it out. It's His plan & He is in control. 

Yesterday I was dressed & ready to go to church. Marlee Anne had said she had missed 7 Sundays so I knew we needed to go. At 9:00 Kendra text me to ask if she could take Marlee Anne. I really wanted to go see mom but didn't want Marlee Anne to miss church yet again. So thankful for Kendra. 

I call mom every morning but it's getting harder & harder for her to talk. When I got there I noticed that she wasn't able to smile. I talk to my sister or brother everyday to see how her day is but I don't get to go over & see her. The mom I saw was not what I was expecting. So many little things had changed. 

I see pieces of her going away more and more. I feel terribly guilty that I can't be there to take care of her. Debbie & Bryant have so much on them. I miss knowing what she is doing every minute but I am not sure my heart could handle this. I go to bed praying she has a restful & pain free night. Partly for her & for my sister & brother so they can rest. I wake up & the first thing on my mind is my mom. Did she make it through the night? Did she sleep? Oh I don't understand this journey!

Please pray for my sister & brother as they care for mom. Please pray for their health & strength. Also please pray for peaceful & pain free days for mom. Thank you!!!

Today

I have written this, prayed, cried, deleted it, prayed, cried, prayed & wrote it again. The words haven't seemed to change nor the pain in my heart. Writing it hasn't made it easier to breathe. Hoping prayers will bring peace. 

Today is my brother Tommy's angel day. I miss him more than ever! Every year on this day for 14 years my mom & I would talk about Tommy, shed some tears, share some smiles & laughs. Today I am once again reminded how different things are with her having dementia. 

All my life I could & have talked to my mom about any & everything. She was always the one I ran to. All my fears, all my joys, the sadness, the heartaches, hurts, prayers & praises. Over the past few weeks things I would typically discuss with her I couldn't. I could always share what was going on in our life & she would pray with me. She always knew what to say, which scripture to share with me & even when no words were helpful she would sit quietly. 

Thursday mom got really mad at me for not giving her some Tylenol. She had just had some 2 hours before. She didn't remember that & thought I was just being mean to her. Debbie came to pick her up to get her ready for her doctor's appt on Friday because our three had appts at Egleston on Friday. She said she would never come back to our house because I wouldn't give her medicine. Those of you that have dealt with this reminded me it's not my mother but the disease. Still that doesn't take away the hurt & pain in my heart. As of today she is still at her home with Debbie & Bryant. 

Friday they took her to the orthopedist about her knee. A mass was found & she was sent to the oncologist. The oncologist said that the mass is damaging her knee & she needed to know where it was coming from. Where all this had started. She found a lump in her breast & scheduled a mammogram. 

Yesterday her mammogram showed three lumps. She had an ultrasound & will be having a biopsy next week. She also had an X-ray of her spine & chest. Waiting on those results. 

Please pray with us for healing for mom & God's will to be done. Our hearts are hurting. I am struggling with understanding all this. 

Neuro appts

Scheduling all 3 neurology appts on the same day seemed like a good time until the day got here. I am thankful for God's timing so that Marlee Anne was busy today. Thanks to our precious friend Kendra for keeping her busy all day & for our sweet nephew & family for going to ball practice with her & bringing her home.

In Michala's typical personality she wanted to go first. After Dr. Flamini saw the pinches & scratches on Michala & me, he agreed it was time to try some medicine for her. We are starting her on respiradol. It's used regularly for patience with Autism so hopefully it will help with her aggression & pain. Please pray that this is a step in the right direction.

Her seizures are getting progressively worse so we are increasing her Sabril again. If this doesn't work we will decrease & try onfi. Every time we think we are running out of options a new med is approved. So thankful for that. As we were discussing her seizures Dr. Flamini coughed & Michala had a startle seizure. He adjusted her VNS. She has about half a battery life. Not sure how long that will last before she has to have surgery to replace it with her new adjustment.

Abe was next. Within a little while of talking about him he started having a seizure. Not something we wanted to happen but glad it happened in the neurologist office. His last EEG showed activity all over. That's typical for his Lenox gastaut syndrome but so hard to control. The truth hurts so bad sometimes. He is having several seizures a day. We are increasing his banzel. Praying this will help & give him some more seizure free moments. His VNS was adjusted & is also at 50% battery life. Dr. Flamini said your children are so complex.

We saved our sweet angel Mary Elizabeth for last. He has never treated her so we went through her history with him. That's always hard but such a healing time for me. After examining her he said he does think she has had another stroke. This is when I took a deep breath almost like a gasp. Again the truth hurts & my mind started wondering when would the next stroke hit, how would it be & how would it affect her. That one I need some time with. He said that he would be glad to order an MRI but was concerned about putting her to sleep for it. He went on to say the results wouldn't change anything. These words rang in my ears & still are. The results won't change anything. He is concerned about how tight she is. We are going to try baclofen. Please pray this helps her.

Thankful we have made it through another day by the grace of God. Thankful for all the love, support & especially the prayers. Thank you!!!

Zero Quit

A zero quit attitude is something we all need. Please take time to watch this 1:45 video, like the FB, follow his website & whatever you can do to support him & his zero quit cause! Thanks bunches!!!

One kid. One idea. Help inspire someone to never quit!

Kevin Jr. (my 8 year old son) wanted a website to share stories and inspire others..

His idea became a reality...  

Check out his you tube video!

 

www.youtube.com/watch?v=4UuryVVuOhE

Help us spread a ZeroQuit Attitude… One Kid at a Time!

www.zero-quit.com

www.facebook.com/ZeroQuit1

www.twitter.com/ZeroQuit

Thank you for helping us spread the word and achieve our goal of 1009 pledges by Kevin's 9^th birthday on August 2, 2013! 

Visit his WEBSITE to take the pledge… Share it on your FACEBOOK page and TWEET it to your friends, family and followers!

the Andrews family

Michala watching....

>
> I was going to send these to Mike & thought you might like to see them too. Michala loves to sit in Grace's old recliner & look out the window. Mike built a window feeder & this is what she watched this morning.

Miracle League

Since this aired yesterday at Chick fil A Leadercast I can share it now. Thankful for this opportunity. So excited about what Chick fil A is doing. Grateful to be there when they presented the $20,000. Thanks to Newton County Rec Dept & everyone that is working so hard to make this Miracle League dream come true for so many!

https://www.dropbox.com/l/tTW4sBjacoOt1lYN525heJ1

Struggles

For awhile now I have been struggling. The email I just sent said a lot of it. I am lonely. I have my husband that I am so very thankful for. I am also very thankful for our wonderful children. Still I am lonely. I always try to look for whatever God is trying to teach me through things. Counting on him. Depending on him & turning to him to fill a void.

Before I continue to share these feelings I want to say I am not looking for sympathy. I do want to ask ya'll for prayers please. I try so hard to cover up & mask the struggles. If not I would be crying a lot more often. I am admitting that being a caregiver 24/7 is exhausting. I have hit a wall & been knocked down hard. Each time I try to stand back up & dust myself off I am knocked back down.

I just received a message from a prayer warrior in my life. It was just kind of out of the blue. She said I am one of the strongest women she has ever known, but I don't always have to be. I don't always have to be. Wow! What powerful words. Just someone giving me permission not to have to be strong.

I don't want to be strong. I want to lie down in my mommie's lap & cry until I fall asleep.

The world can be such a hard, dark & lonely place. That's the world I am experiences lately. A world of sickness, disease, handicaps, seizures, fear, worry & heartbreak.

I fear waking up & one of my babies have gone to be with Jesus. I worry that I am missing something that is going on with them medically. I worry that Mary Elizabeth will get sick before we find her a new doctor. I fear getting old & who will take care of my babies. I fear getting old & my babies not being here anymore. I worry about Marlee Anne having these fears.

Am I doing all I can do? Am I doing the right thing? Am I doing what God wants me to do? Am I doing his will? Am I becoming more like him? Am I being moldable?


The sad part about this battle with satan is that I know what's right. I know that God's got this. I know the scriptures. I am praying the prayers. I got the praise music going. I can't go it alone. I have said many times this takes a village. Well I need ya'll. I need that village lifting me up. I need prayers for an attitude adjustment. I need to change my thoughts & ideas about all this. I need the fear & worry to be gone. I know all that's possible.

Wow. Look at that last paragraph. I am being very needy. My first thought is to apologize for that but I cannot. I am really in need right now. Please pray for me.

Thank you!!!

Mommie of children with special needs

A friend of mine shared this yesterday & I wanted to share it with ya'll.

I am a special needs mom. And I have secrets. Things I don't talk about and stuff that other mom's don't know,or may have forgotten along the way... 

• Special Needs Moms are lonely. I yearn for more time with friends and family. Authentically, I have a positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy, and have enough help, but I am lonely. Being a Special Needs Mom doesn't leave me the time to nurture and maintain the relationships I really need.I could get super detailed here about the hands-on caring for my child ( Do you remember when your kids were toddlers? That hovering thing you had to do? It's that plus some.) The plus-some includes spreading my Mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention.I don't have much time to call or email my friends and even family...and if they don't call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I really miss the day's when I had playgroups with other Mom's, open-house style, dropping in and drinking coffee at a friends'  kitchen table with my child playing nearby.  

Special Needs Moms have to work extra hard to preserve their marriage. This goes with counter-balancing the high stress of special needs parenting and directly combats the sky-high divorce rates for special needs families. I put extra pressure on my husband, he is my best friend and sometimes I expect unrealistic BFF behavior from him at the end of the day( see #1). He is my hero,supportive, patient and loving- and my kids would be totally lost without him. The success of our marriage, will affect the health of our children. My husband and I haven't spent a night away from our kids for six years, we " date night" out of the house every few months, for a two-hour sushi date. Our marriage is a priority so we " steal" our moments when we can.

Special Needs Moms are not easily offended. Despite what our social media status updates say, we are vulnerable and life messes with us daily. So really, ask what you want to ask and it's okay to start with " I don't really know how to say this, how to ask you.." I am especially touched when someone cares enough to ask me how my child is feeling,or how to include my child in a social gathering, meal or other event and am happy to collaborate on what will work for us.

Special Needs Moms worry about dying. We worry about our kids getting sick and dying, we worry about our husbands dying and leaving us alone, but most of all we worry a lot under the surface, and especially about being around to care for our child.We watch people we know grieve the loss of their children and try not to think about it. On the up side-we live life fully and don't take it for granted.

Special Needs Moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language " spoken" in every home. 

Special Needs Moms know to savor the gift of a child saying " I Love You." For the longest time I wasn't sure if my daughter Zoe, would ever speak the words. As a newborn, it was her sighs of contentment, - as I held her against my breast, that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her, when I carried her in my arms. The first time she found her words, she was already a little girl, and every time she spoke them I cried. She is ten now, and her words, even more tender and wise. I leaned into her at bedtime the other night, as her hand reached up, caressing my cheek, she whispered..." I love you Mom, for taking such good care of me."