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."

Two weeks

Two weeks ago I was making this drive in the opposite direction. I was so worried about Abe & what was going on with his little body. What was he fighting? What was causing so many seizures?

On the way I started praying that God was ahead of us. Literally making a path through traffic for us. The wind was blowing the van so hard. I prayed that the wind would stop. I could still see the trees blowing but the van was no longer swaying. No longer hard to control.

Those of you that have experienced the hospital, ER or any doctors & nurses know how important it is for God to go ahead of you & put the right people in place. As soon as we pulled into the parking lot I could see he had gone ahead of us because of the parking attendant & the parking place.

I walked through the doors of the ER carrying Abe & a trauma nurse walked out. She took one look at him, made a quick call & we were in the trauma room. Like a well rehearsed play the doctors, nurses, respiratory team & techs moved about working on Abe.

After what seemed like an eternity of labs, X-rays & test the doctor said I am stumped. He was stable enough to move to the PICU.

Same thing there. God's steps ahead of us were in place & very visible. The PICU team got to work right away getting him settled & getting him comfortable.

The next two weeks were one of those roller coaster you would like to skip even if the wait time is short. Thankful that God carried us through.

On the drive home 2 weeks of tears flowed. It was a mixture of scared, worry, fear, joy, blessings, peace & so much more mixed in. After only a few minutes of crying I began to sob because the joy of The Lord & the love of God overwhelmed me. This is so not the perfect life I had dreamed of. God is so much bigger than that. On the way home I could not wait to he with my perfect family God created.

I cried also for the 2 little lives that were lost on either side of us while we were there. I pray for their families. I pray for Jack & Kemper as they are still in the hospital fighting a good fight. I pray for Mackenzie as she had another blood clot this morning but survived it. I pray for the families that went home while we were there. I pray for the families that are still in their struggles. I pray for the doctors & nurses & the rest of the medical team as they help to heal these children. May the feel God's guidance & allow him to use them.

The amount of thank you notes that I need to send out is unreal. Sadly they will most likely get placed on the back burner for now. Please know that our thanks is great to those of you that love, supported & prayed for us during this struggle. We are thankful that after all these years we have family & friends that haven't walked away & haven't given up on fighting with us. We couldn't do this without ya'll!!! Thank you so very much!!! Now go hug your loved ones. Tell them that you love them & make sure they know God as their personal savior.

With much love & gratefulness!

It's me again God

Do you ever feel like saying it's me again God? Even though I know He is wanting & waiting for me to come to Him I feel like saying that.

Well here I am again. Sitting in the PICU watching Abe's numbers on the monitors. Every doctor that comes in says they are baffled. They just don't know.

His seizures have thankfully slowed down some. He is on 10 liters of high flow oxygen in hopes of giving his body some rest. It's working so hard to fight whatever is going on in there. His temp is 103. There is a war raging on inside.

As I watched his body have seizure after seizure back to back I wondered if their is peace in his soul while all of that is going on within him. I wondered what he was feeling & what he was thinking. Could he hear me tell him that I love him? Could he see me beside him? Could he feel my touch?

Each day I ask God to use us. To use our family to minister in some way to someone. On the way up to the ER today I asked God to use us.

Not sure if he used us for the nurses or the doctors we have seen but I hope He did. I had to move the van & coming back up to the PICU I rode the elevator with a dad whose 14 year old son had a stroke at school on Monday. He is being transferred to Scottish Rite tomorrow to the rehab unit. As we stood out in the hall talking my heart was breaking. It all happened so quickly which I am thankful for because I had no time to get in the way or think about what I was going to say, who else was around or who was watching. God's words, God's timing, God's plan & God's will. My heart is heavy tonight for this 14 year old boy named Jackson & his family. You may have seen it on the news. Please lift them up in your prayers!!!

Well I am about to ask for another blanket. I don't know what the temp is in here but you could hang meat. They are keeping it cold because of Abe's fever. I am freezing. Please keep Abe in your prayers. Also please pray for Mike & the girls!

At least they gave Abe a Mickey mask. He wanted me to take a picture so his sissy could see it. They also gave him Cars diapers but I don't think he wants me to share that picture with ya'll!!!

5 years ago

5 years ago this precious man gave me the most wonderful Valentine. Abe stole my heart that day. I look back on all he has endured the past 5 years & I have a renewed faith & hope in God. He has carried us through so much & never left us. He has given us the most incredible family, friends, doctors & nurses to walk this journey with us. I see Abe smile & it melts my heart. I hear him laugh & know that no matter what everything is going to be alright. I am so thankful he is a true mommie's boy. Thank ya'll for continuing to lift us up in your prayers these past 5 years.

From Mike

Dear God,

Thank you so much for my son –Abe.  He is such a blessing.  I am honored to be his father. He is so special. Touching lives and inspiring souls all according to your plan. Last night, late last night I heard a group of people singing and when I asked what was going on lo and below Abe was getting a happy birthday song sung to him by the UGA Miracle Students through the internet. They love him, must be those blue eyes, long hair and beautiful smile. Father God thank you for allowing me not to dwell on the obvious, but to be thankful for what you have provided. It is more than sufficient.

 

Abe another year- good. Son I know your struggle, hang in therewe know how the story ends. The Apostle Paul wrote in 2 Corinthians "Therefore we must not lose heart for outwardly we are wasting away but inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we must fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." God's words of comfort to me Abe. They help me to keep my focus on the greater things to come. Abe keep up the good work. 

Happy Birthday

I love you my son,

Dad