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Saturday, October 19, 2013

Birthdays and Bittersweet Realities... and what I have learned...

Tomorrow is Brynnon's 14th Birthday!!!
On this day it was at 2 AM exactly 3 years ago that my life changed forever. Brynon had experienced his first known 5+ minute Tonic Clonic Seizure in Jan. 2009. We were told that everyone is allowed one seizure and he wouldn't have a seizure while sleeping again, it was very rare. We were also told it would be very unlikely that he would ever have a seizure again if he remained seizure free for a few weeks. After a year, we could no longer worry... 
Three years ago.... Brynn requested to sleep on the sofa bed that night after a friend had come for the weekend and gone home. As I sat blissfully nursing Abigail in the early morning hours... Brynn peacefully sleeping on the sofa bed. I saw him look at me, his face filled with terror. I called his name and his eyes rolled back as his body flexed and stiffened. I cried out to God and kept calling his name with no response... His lips turned blue as time seemed to stand still... I screamed for anyone in the house to come to no avail... 
I placed Abigail down and turned him to his side as his body violently convulsed... 
Mouth foaming and the painful reality that had I not let him sleep on that sofa bed, I may have never known... 911 was called... still not breathing... 
Fire engine came just as he was entering the postical stage and his body in a deep sleep finally starting to breathe... 
The intense Fear of the unknown was overwhelming... 
I watched Brynn sleep for several months on that sofa bed and began to identify different seizure types. I learned fairly quickly that he was seizing almost every night and that not all seizures were Tonic Clonic. In the year that followed I researched and learned more about Epilepsy than I had ever believed possible. I learned too that Moms have an instinct that no one else has when it comes to their precious children. I also learned that this wasn't a simple take your medicine and it will go away issue.


This was a fight for answers battle that continues to this very day. My sweet little boy said he wanted to die with the first med... the second helped but did not give complete control... I went for a second opinion when the neurologist he was seeing wouldn't answer phone calls and didn't even take the time to read his 24 hour Video EEG before our visit 2 weeks after the test. The New Neurologist hit the nail on the head before any testing was even done, based on seizure history, Neuropsychologist report and all his medical files that were sent before the appointment "I believe your Son has Malformations of the Cerebral Cortex." We did his fourth Video EEG and it was confirmed, the prior neurologist was completely missing some important information. The third medication had the same effect, helped but wouldn't completely make the seizures go awayAnother EEG confirmed that Brynnon is "Refractory and his EEG's looks like Encephalopathy." Fourth and fifth medications had the same effect... Refractory or Intractable Epilepsy means that medications either do not work well or do not work at all in treatment and prevention of seizures. Sadly, about 1/3 of all Epilepsy Patients will become Refractory at some point. In Brynnon's case, long term untreated seizures likely caused him to remain refractory. I have experienced a lot of pain in the past three years... but I have learned so much about myself in the process. I have learned too that Abba Father certainly knows exactly what we need and when we need it. I have learned to dance in the rain of uncertainty as well as how to let go of things that I have no control of. Most of all, I think I have learned that ignorance may be bliss, but it also can be dangerous. I am forever grateful to God for giving me the strength to move forward... I am also thankful for everything else I have learned... 
 I have learned what Seizure Sick looks like... 




 I have learned what the VNS can do, as well as what it cannot do... 


 I have learned that you have to work hard for the things you need, and depending on other people is not a good idea.... 
 I have learned that even even a medical professional saying the "R word" can be painful... 
 I have learned that some seizures are invisible...  
I have learned that Doctors can be uneducated too... and worse, they can be wrong. Always follow your gut and demand answers...  
I have learned that Epilepsy can affect more than one child of the same family and when it does wanting answers to WHY becomes priority more than ever before...
 I have learned that we may well feel like running from difficult times, and if you insist on running... Pleased do run in the right direction... 
 I have learned that seizures can go unnoticed even by medical professionals without the proper test...



I have learned that God gives us exactly what we need to get through trials and tribulation, sometimes they come in unexpected packages...  
 I have learned that capturing smiles is a lot more fun than capturing seizures in pictures and videos... 
 I have learned that sometimes being silly is the only way to learn to smile through and fight the seizures...
I have learned that God sends special people in your life, exactly when you need them. Friendships come from unexpected people and in the midst of tremendous storms... those sweet blessings never fade from memory...
 I have learned that a picture can tell a powerful story, but it cannot really tell the whole story... 
I have learned that our children will grow up to be men one day,

and what they see they will   repeat...  

I have learned that it really is the simple things in life that brings the most pleasure and the most precious memories... 









The past three years have brought a roller coaster ride that I never wanted to get on. I fought and cried to get off many, many times... but as everyone does, I had to learn that everyone has their own journey. It doesn't matter what your journey brings, it matters where it takes you. Trying to remain focused on the positive in any situation helps keep peace in the midst of the most terrifying storms. Strength doesn't come through cowering down, it comes through fighting through the storm, no matter how powerful it seems. I have learned many things in the past three years. Some things I had to fight for, some I had to fight through, some I wish I learned so much sooner and some still that I wish I never had to learn. I wish to thank all of you Epilepsy Warrior Mommies and Daddies... May God grant all you other Epilepsy Warrior Parents the strength to continue to push through. Your love and support through my journey has brought me so much knowledge and wisdom as well as strength.  
"2 Cor. 1:2 Grace be to you and peacefrom God our Father, and from the Lord Jesus Christ. 3 Blessed be God, even the Father of ourLord Jesus Christ, the Father of mercies, and the God of all comfort; 4 Who comforteth us in allour tribulation, that we may be able to comfort them which are in any trouble, by the comfortwherewith we ourselves are comforted of God. 5 For as the sufferings of Christ abound in us, soour consolation also aboundeth by Christ. 6 And whether we be afflicted , it is for your consolationand salvation, which is effectual in the enduring of the same sufferings which we also suffer : orwhether we be comforted , it is for your consolation and salvation. 7 And our hope of you isstedfast, knowing , that as ye are partakers of the sufferings, so shall ye be also of theconsolation."

~Denise


2 comments:

  1. Thank YOU for sharing your heart Denise ! God's peace my friend

    ReplyDelete

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