8 Years ago....

I don't know if this date will ever lose the significance it has in my heart.  It is a day I still remember vividly...actually with a bizarre level of detail.  It was the day I saw my child dying. It was a day I saw the faces of my other children in more pain than I could imagine as fear of losing some one so dear to them hit them truly for the first time  It was also the day my baby boy and I started our journey into this thing called Epilepsy and seizures and crazy diets and refusing toxic treatments.  It was a day that planted a fear so deeply inside me that I knew only God understood. I didn't know that my youngest son and I would, more or less, walk this journey alone but we haven't done so bad.

8 years ago, everything was unknown...would he be alive the next day or the next?  Would he be permanently changed?  How could I help?  There were no answers.

But, 8 years later, most of it spent as a single parent...I have gotten to witness first hand, and continue to see, the amazing young man he is becoming.  Just a few weeks ago I got to watch as he signed his commitment to his first choice college - after also being accepted into his #2 and #3 choices!  Honestly, 8 years ago I didn't know if that would ever happen.  He has worked hard and I am proud of him for not letting anything hold him back.

I know many of you have prayed over this young man and thank you is not near enough.
 I know God heard our cries. 

Thank you, God, for this child.

Blessed,

How 5 years can change the world...

Today is a day when I need to write, need to spill words out somewhere. Emotions are thick and my mind swirls with thoughts, memories, dreams and questions.  Today is a day that brings me haunting memories and also great blessings. 

5 years ago, I almost lost one of my children.  I don't mean there was a close call, I mean I saw the life leaving his body as he lay on the ground among wet, cold, muddy leaves.  I still can remember what his blue face looked like and  the awful gurgling that came from his lungs as his life slipped away.  They say time heals all things...no, it doesn't. These are the haunting memories.

I know that God reached down and breathed life into my dying child that cold, rainy day.  There is no other explanation. Today, that same child, went alone for hours exploring with our dog.  Tonight he went to the movies with his big brother.  Just a moment ago he towered almost 9 full inches over me as he reach down to hug me and tell me he loved me and good night. He is now upstairs reading something way over my head.  Those are the great blessings. 

I stood at the sea shore today, something I promise myself I will do more of each year and I don't. I needed to go today to seek the magical healing of the waves and the salt air.  I am not sure if I found that healing but I did find my heart feeling more than I would have liked and my reserves pushed. I was looking for something...it wasn't there.  I wanted to cry, but I didn't. I head into 2017 in many ways the same as last year, though my thoughts and feelings are clearer.  The last few days of 2016 will be spent recalibrating myself and my heart and fortifying my foundation.

Today reminded me to hold onto what is true and solid, focusing on God's great gifts. I have learned that life is not kind but still there is so much to be thankful for and I am living thankfully...in all circumstances. If you find yourself walking the seashore you may very well find me there again staring out and seeking before the year truly ends. Hold on....

Guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.

Psalm 25:5 (NIV)

3 years later

I meant to blog about this yesterday, which was the anniversary of the day, 3 years ago, that my life and that of my family changed but the day got away from me.  But I can't let it go by with praising God. You see, I almost lost this little man on that day 3 years ago.  You can go back and read the story (in 3 posts) here: 2011 Ending in Prayer, (Part 1).  If you have ever seen life leaving the body of your child you will understand the deep and heart wrenching change it can have on you. You can never truly forget. You can never fully be the same.  That day, though...I saw a miracle that only God could perform.  Also, that day started a journey towards a word I knew very little about....Epilepsy.  But, as yesterday dawned I was awe struck by the blessing that I saw when my strong, healthy and seizure free young man wrapped his arms around me.

I should also mention something about our Christmas celebration.  It was fun, fully of family and friends and lots of laughter (laughter being the best medicine!) and way too much food.   I was so glad to have my sweet family gathered around me. I am very grateful for each and everyone of the them and what they bring to our family...even the fuzzy ones!.

Here's to a blessed and joyful New Year!

Blessed and Seizure Free

New Years 2014

Yesterday marked a very special milestone.  My DS2, who many of you have prayed over and followed his story, hit the 2 year Seizure free mark.  I can't tell you how far in the future that seemed at one point.  There was so much fear that we would not see it...but yesterday was the day!

DS2 has really gone through a lot in the last two years, especially since we chose to go a somewhat non-traditional treatment route by going on the Modified Atkins Diet (version of the Ketogenic Diet.)  It is hard to be a kid on a very restrictive diet.  There are so many events that are food focused, particularly high carb food focused!  I am so proud of him and how well he has handled it all.  We have just weaned off the diet and so far, so good.

As Micheal in A Sound of Music, A Salute to the Tony Awards, The Center Players, NC

One really cool thing that came out of the last couple of years is my sweet boy discovered he had quite a talent for the stage.  It has been such a great experience for him as he has had to make adjustments in his life. He found an escape from much worry and stress through performing. I am so proud of him.

Temps & Tops, Salute to the Tony Awards, The Center Players, Elizabeth City, NC

As Sebastian in The Mermaid, Impact Children's Theatre, Florence, SC

I feel so blessed!

If you are not familiar with my DS2's story and you want to know more, catch up HERE.

Give thanks to the LORD, for he is good. His love endures forever.

~Psalm 136:1

Update on the Little Man

Some of you have sent me messages asking about how my DS2 is doing.  He is doing really great!  Today we spent the afternoon at MUSC to get the results of his recent sleep study and extended EEG montage.  This comes after a visit and EEG in April that didn’t bring the news we had hoped for.   Unfortunately, his April EEG still showed abnormal activity and the risk of seizures has kept us on the diet.  After his initial disappointment he has managed to have a pretty good attitude about the limitations it continues to place on his life.  He does so much better than I would.  He has will power of steel!  

Fortunately, today the results did not show any abnormal sleep patterns and NO sign of seizure activity during sleep.  WhooHOOO!  It was such huge relief to find out there are no additional issues; and at this point we don’t have to add medications on top of the diet. 

DS2 just finished 5^th grade with wonderful grades and a Presidential fitness award. He also recently played the part of Sebastian in a local Children’s Theatre Production of A Little Mermaid. He is busy this week at a musical theatre day camp and will be spending his summer learning to sail once we get moved.  We are blessed and I am so proud of this little man and how hard he works to not allow his medical issues to hold him back. 

Behold, children are a heritage from the LORD, the fruit of the womb a reward. 
Like arrows in the hand of a warrior are the children of one’s youth. 
Blessed is the man who fills his quiver with them! 
He shall not be put to shame when he speaks with his enemies in the gate. 
~Psalm 127:3-5

1 Year...

Today marks our 1 year seizure free mark.  Although it isn't the much looked forward to 2 year mark...it is a good day.  Last year at this time, I was in an emergency room with DS2 after he had experienced another, (albeit different type),  seizure and we were waiting to see a pediatric neurologist.  Today he is spending the afternoon on the golf course with his Dad and big brother.God is good.

It has been an interesting year, as I have learned more than I ever wanted to know about brains and seizures.  The word epilepsy has become a regular part of my vocabulary. We chose to forgo medications and try the Modified Atkins Diet (a more moderate approach to the Ketogenic Diet) to treat the seizures.  Seemingly we have been rewarded and my son is doing well.

This year has changed me in ways I couldn't have imagined.  I suppose it has changed our whole family.  Some of those changes have been been good, some not so good. I still have a huge amount of anxiety over even the smallest of details but I am slowly getting better.  DS2 is pretty patient with me and my "mama drama" and my other children seem to (for the most part) understand why I am so concerned.  I continue to struggle to balance the overprotective instinct with DS2's need to grow and handle things on his own.   It is a new season for us and I try to be Thankful to God for His mercy and that my family is still all together

Over the Moon...47 weeks Seizure Free

I don't write about DS2's seizure disorder very often but it is time for an update!  Yesterday we went for his check up with his Neurologist at MUSC and he had a great visit. I have to say that I love our Neurologist and the staff at MUSC.  I know it is a God thing that we ended up with Dr. Turner.  His level of care, concern and understanding is beyond anything I could have hoped for.  He deals with DS2 so wonderfully and doesn't forget that this Epilepsy Journey is one the whole family takes.  I am grateful that he proposed and has directed us in using the Modified Atkins Diet as a treatment for DS2's seizures.  He and the entire staff at MUSC seem to understand how scary this journey is daily and are extremely patient with me and my Mama Drama (which is more valuable than you can imagine!) 

As far as DS2, he is 47 weeks seizure free (yep....I count each and every week!) and growing like a weed.  He has been on the Modified Atkins Diet (a less restrictive version of the Ketogenic Diet) since February and so far we have seizure control!!!  His blood work has been fantastic and shows no ill effects of the diet on his other systems.  He does amazingly well on the diet, much better than I think most adults would do!  Of course, the holidays are presenting some challenges as all the traditional sweets are more available and tempting but so far, so good.  I am proud of my little guy and his ability to cope with the changes in his life.

It has been almost a year since our world changed and we began this journey, but I know God has blessed us beyond measure with each moment!

30 Days of Thanksgiving: Day 16-29

30 Days of Thanksgiving

Day 16-29, 2012:  Oh my, I haven't done very well with my daily posting!  (But rest assured I have focused on what I am thankful for and spent more time IRL on that than in the virtual world sharing about it!)  It has been a crazy, busy month and I think this morning is the 1st time I have felt I had time to sit down and share. 

This year, I am acutely aware of how much I am thankful for my youngest DS.  We started this year not knowing what the future held for him (not that we know that now...but you know what I mean!)  If you don't know the back story you may want to start reading HERE  In the last 12 months I have witnessed his very close brush with death and more seizures.  Then walked with him down the path through some scary months of doctor's visits, tests and a major lifestyle change.  It hasn't been easy, but honestly, it hasn't been hard.  When faced with a very somber reality and what possibilities it brings into your life, it is amazing what strength God gives you to change.  I don't know that I have slept through the night in over 10 months but I don't resent that...I am so thankful to have the opportunity to check up on an alive, sleeping child. 

There have been some very poignant moments of thanks where he is concerned this past year, some of them big and some of them small, but none insignificant.  When he walked on stage to perform at his piano recital, I sent up prayers of thanksgiving that he was fully functioning.  When baseball season rolled around, I was astounded that we found ourselves sitting on the bleachers...there were many months that we didn't think that would ever happen again and I was in tears of thanksgiving.  When Mother's Day rolled around and he was there.... I felt thankfulness beyond compare. During the summer days spent swimming in the pool...I was thankful for each and every moment. When flag football season started and I got to see him take up his spot at quarterback I felt thankfulness that was overwhelming. 

The last few months have clarified so much in my heart and mind and put life in a perspective that I "knew" but had never had to live with each of my children.  Considering how much I know now about what we are dealing with ...seizure disorders...Epilepsy....I am so very aware of how blessed we are.  I have met so many families that are carrying a much heavier burden and that gives me pause for gratitude daily.  So, I thank God every single day for my children and husband because I know, without a shadow of a doubt, HE is the reason I am blessed to share life with them.

I am also immensely thankful for my handsome husband.  He is a great husband and a wonderful father.  I and so grateful for his patience, love and how he takes care of our family. I know that I have a lot to be thankful for in the marriage department and I count those blessings every day!

I know that even though my 30 Days of Thanksgiving posting was not as consistent as I had planned, I am still very filled with gratitude for all the blessings in my life each day....and for a Savior who made it so.

Praise God, from whom all blessings flow;

Praise him, all creatures here below;

Praise him above, ye heavenly host;

Praise Father, Son, and Holy Ghost. Amen

`~Thomas Ken, The Common Doxology

17 Weeks Seizure Free and a Ketogenic Diet!

Last week we had a check up with DS2's neurologist at MUSC.  It has been 17 weeks since he has had a seizure and he is doing great.  We have been treating his seizure disorder with the Modified Atkins version of the Ketogenic Diet.  Yes, there is a diet that has worked wonders for many children with Epilepsy! 

With the guidance of his Neurologist, we chose not to medicate but to try the Ketogenic Diet and so far we are seeing wonderful results.  I haven't mentioned our treatment plan in detail before as I wanted us to have a few months to get into the groove with it and see what the results were.   He has been seizure free for 17 weeks and his headaches have practically gone away (he does occasionally headaches still but they have been treatable with over the counter Ibuprofen and he hasn't had to leave school because of them.)

The Atkins version of the Ketogenic Diet isn't as rigorous or as difficult to manage as the pure Keto. Diet but it is still a challenge as we have him at around 15 carbs per day (YES...per day.)  The biggest changes for us are that we no longer eat fast food out for the most part and have to plan for all his meals and snacks ahead of time.  I sometimes feel like my entire day is spent planning what/when he will eat.  He is tolerating the diet well (with only a few complaints of "I just want a piece of bread!") and we haven't had any negative side effects thus far.  I realize if his seizure control changes we will have to revisit the treatment plan but for now I am so happy that it seems to be working.  His Neurologist was practically giddy at the appointment and how well DS2 is doing.  All blood work looks good and things are progressing better than I could have imagined. 

I know things can change unexpectedly and we will deal with them if they do.  I am so thankful for this treatment plan and how it has helped my little guy.

DS2 is doing great in school, playing baseball and life is as it should be for a 10 year old boy!

2011, Ending in Prayers (Part 1)

I mentally began writing this post in my head on Christmas night, thinking it would be filled with high lights of the last few days and how we celebrated Christmas.  But sometimes life has other ideas.  First off, we did have a wonderful Christmas!  Christmas Eve we enjoyed a beautiful and touching candlelight service at our church followed by dinner at our house with some dear friends.  Then we set up the camera to try to capture a picture of the Jolly Old Elf when he made his anticipated delivery…of which we were successful!  YES!!!!  On Christmas Day we awoke early (yep, early…) and had a wonderful time opening presents and sharing with each other before church.  Then came home and all put our jammies back on and spent the day playing with new toys, napping and eating (way too much!)  It was a perfect Christmas Day.  On the 26th we traveled to GA to spend the day with my parents and celebrate with them before heading to my in-laws.

This is where my post veers off from where I had planned and why I haven’t updated or posted this week. I haven't been sure I should write about this or even if I could, but I have said I wanted to be transparent and this is where and what we are dealing with now...

On Tuesday after Christmas we experience one of those moments in life that you know will be forever cemented in your mind.  After lunch my boys went outside to play in the woods behind their Grandparents house (one of their favorite things to do).  A bit later, as we were all still sitting around the table in the kitchen, we heard my oldest start to yell.  At first, honestly, we thought it was the yells of playing boys…until my husband stepped out on the deck to hear my oldest  scream, “He is unresponsive, Help!” as he crouched over his younger brother.  My husband began to run and I followed behind.  He reached my youngest son before me and I yelled asking if we should call 911.  He said yes.  When I reach my son, he was blue, not breathing and gurgling…and we had no idea what had happened.  My older son told us the last thing his brother said was, “I am blind! I can’t see!” and then he did a half spin and started to fall.  My sweet oldest son acted quickly and caught his baby brother and laid him on the ground before calling out for help.  He had no idea what had happened. 

I stood there… looking down into the face of my baby boy…he looked unlike anything I have ever seen.  He was blue and pasty and I didn’t know why.  This is the child that plays hard, loves hard and is this missing piece of our family puzzle that we didn’t know was missing until he joined us.  Truly I couldn’t tell you what I was feeling because it was unlike anything I have ever experienced.

I dropped down on that cold, muddy ground and with all my heart called out to the only one I knew could help us at that moment….God.  I prayed and I prayed harder and louder than I have ever prayed.  I needed the help of my God; I need Him and His power more than any single thing in life. 

After trying to determine if my son had received an injury my husband grabbed him up and began to run out of the woods.  As he began to run, a small moan escaped that little body.  When my husband dropped to the ground with him as the ambulance was arriving my son opened his eyes, but there was no responsiveness….no acknowledgement of anything.  Still not knowing what was wrong and desperate to help I thought maybe he was choking but his jaws were clamped together and I had to use 2 hands to pry them open to try to see if his airway was blocked.  His jaws never relaxed but at this point we had shallow breathing…