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)

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

Getting Healthy!

I know a lot of bloggers who have had great luck (and I am sure found great motivation) by blogging about their attempts at losing weight and/or getting healthy, but I have always been a bit hesitant to put it out there a whole lot.  It just wasn’t something I wanted to blog about because quite frankly I was (AM) more afraid of failing in this very public forum than anything else!  But in recent months an old friend has taken control of his health in a very inspiring way and with the great success I have seen in his life and the life of my youngest son with the diet he is on for his seizure disorder it has started to tug at me and the way I am taking care of myself. 

Actually, I am in reasonably good health and I am not feeling motivated by a desire to lose weight (…though, that would be a big, old plus if I lost a few pounds!) but I am motivated by wanting to get healthier and stronger.  The only issue health wise that I struggle with is PCOS/insulin resistance and it can only be helped by taking control of my diet and exercise.

I am finding motivation in the upward creep of that number I get assigned on each birthday and by watching family members who are not taking care of themselves and how it has affected their quality of life at what I consider too early an age.   I want to be strong and full of energy to enjoy this great place in life that I find myself!

So….I am doing away with this….

Source: dietcoke.com via Mary on Pinterest

It probably sounds silly but it will be my biggest challenge.  Fortunately, I am not addicted to caffeine as I gave that up a few months ago but I am pretty addicted to my beloved Diet Coke…

I am also jumping on the low carb bandwagon with my youngest son (who is on the Modified Atkins version of the Ketogenic Diet for Epilepsy.)  I have had good luck losing weight in the past with the Atkins Diet and after seeing so much evidence of how carbohydrates (SUGAR) damage our mind and bodies I feel it is right for me.  Not to mention, low carb diets are the best diets for combating the issues related to PCOS and insulin resistance!

So there you have it…I am putting my health out there…publically (gulp) and hope to find the motivation and commitment I need to carry it though!

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!

Seizures, We Now Know Why...

The other day I was feeling quite chipper and had the music on in the kitchen and was doing a little dance when in walked my youngest DS.  He stood there observing my wondrous dance moves and then announced, "That is why I have seizures...your dancing," and turned around and walked out.  Yep... he tells me it is my dancing that causes his seizures. 

Well, at least we now know why.... :-/

A Diagnosis...

My boys, planning, creating and always doing something!

I have been pretty quiet the last few days and that is due in part to having overnight guests from last Wednesday through Sunday and also from the fact that I have spent what little free time I have had trying to understand and wrap my head around the diagnosis that we finally received last week concerning my sweet, youngest son. 

After his adventure in testing, a 72 hour EEG, abnormal brain wave spikes were found.  This, in conjunction with previous seizures, brings the conclusion that my sweet boy has a seizure disorder.  So...there is an answer, but it is an answer that brings more questions. 

The Neurologist gave me lots of information to digest and told me to talk it over with DH and then we can all decide how to proceed.  The Dr. was very sweet in that he understood that the information he was giving me was going to raise more questions and he assured me he would patiently answer each one.  What a relief because as the week has gone on my list of questions has grown substantially. 

As far as my sweet boy goes, he is feeling good.  He still has some headaches but we are wondering if they are allergy related and not related to the seizures (see...we still have lots and lots of questions.)  His primary Dr. put him on a 24 hour allergy medicine after our visit last week and it does seem to be making DS2 feel better. 

It has been 5 weeks since the last seizure...and we are still wading through this new stream of life.  There are so many questions about the present and future for my little boy.  As a Mom, it scares me a lot. I am concerned for the changes this may bring for DS2.   I am not sure what we are going to do as far as treatment as there are many options; some include medication, others revolve around diet and vitamins but all include a large dose of prayer.  I am praying continually to keep reminding my heart (and head) that God is in control.

Update on my Little Man

Yesterday we finally got to see a Pediatric Neurologist at MUSC.  They also ran a short EEG.  Fortunately, that EEG showed nothing irregular! The Dr. ordered a longer 72 hour EEG.  I should hear from them sometime next week for scheduling of that test.  DS2 will be able to do it from home rather than stay in the hospital which is GREAT!

What I do know from the results of all the tests DS2 has had is… he is healthy as a horse; for that I am so thankful.    So, we have no definitive diagnosis on what caused the seizures.  I am so relieved that we have found nothing wrong with my sweet little man, but also find it unsettling not to have some concrete reason why. 

Why are we so much more comfortable with black and white answers?  I want something that says 2+2=4, not a “we may never know why this happened.”  BUT, that is where faith comes in.  I believe God has His hand on this child of mine.  He is feeling great today and I am going to stand on that!

If you need to catch up on what started this journey

check in out HERE

2011, Ending in Prayer (Part 3)

For background please read here for Part 1 and Part 2 of this journey.

At the hospital, my little guy was responding well and the pediatrician diagnosed him with having experience fainting and an extended seizure.  It is called extended because it lasted for more than 5 minutes, which is not normal.  He was talking, walking and physically seemed to have no lasting issues.  An EKG was performed and the pediatrician mentioned some irregularities but it needed to be looked at by a cardiologist.  My little man was tired and drifted in and out of sleep, which is apparently normal after a seizure experience.  We were told this could happen again or it might not…there isn’t a sure way to know.  They released us with some emergency meds to administer in case of another extended seizure and told us to follow up with his Doctor at home (an appointment I made from the emergency room!) 

We left GA early on Wednesday (the 28^th) for home and on our way home we got a call from the hospital telling us that the cardiologist had looked at his EKG and needed us to follow up with our DR. ASAP.  The hospital called and faxed our Dr. the information and EKG results so they would be waiting for us at our appointment the next day.  When we reported to our Dr. the next morning he had already gone over our results sent from the hospital and felt we needed to see a Pediatric Cardiologist.  He also performed an EKG in his office just for comparison.  We are now awaiting a visit with the Pediatric Cardiologist (their offices have been closed for the holidays until in the morning.)  My sweet, but very active little boy is on a strict No physical/sports activity order until we know more.

He is doing well and just seems a bit tired at times.   Today was the first day back to school and until we have further information we are only going for ½ days.  By picking him up at lunch he will avoid the excitement and temptation of P.E. & recess.  His teachers are also very supportive and are keeping an eye on him to make sure he seems OK and isn’t over exerting himself.  Leaving him at school this morning was one of the hardest things I have had to do.  It left me in a panic on so many levels.  This is worse than when I had newborns, I think.  It is very scary.  But…I know the one who is in control and I trust Him.

It isn’t only us who is carrying this burden, but my oldest son (who turns 15 this week) is struggling to deal with it as well.  He was there even before we were, and felt the fear and feelings of inadequacy in a way that most adults never experience… much less a child.  Our daughter left to go back to college yesterday and I know she has carried a huge weight back with her as well.  We are all feeling the need to nest and draw close to each other and just be together.

I would like to say that I have been all sugar and roses during this ordeal, but I have not.  Both my husband and I are tired, stressed and yes…fearful.  I don’t know how we can’t be. The future is uncertain (feeling more so than usual.)  We don’t know what the next round of doctor’s visits will bring.  For me, I am spending a lot of time in prayer…for it is where I find my energy, my encouragement, the only place I can find peace.

This is a link to a song that is touching me like never before as I walk through each day: “My Savior My God” by Arron Shust.  I hope you will click over and listen to it and be blessed (for some reason I am not being able to embed it!)  Just the opening lyrics seem written just for a time as this:

I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my savior

Thank you all for your prayers, comments and concerns. 

I continue to covet them as we move forward in trying to discover what is going on with our little man.

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…