Wednesday, January 01, 2014

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!

Sunday, December 29, 2013

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. 


Tuesday, November 26, 2013

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. 

Thursday, November 21, 2013

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.

Monday, October 28, 2013

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!!!

Thursday, August 29, 2013

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. 


Thursday, June 20, 2013

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!!!