Ones Mountain is anothers Molehill…

 Being Brynns Momma has brought me to many support pages, so many blogs and many places reading about some really special children. Across the Special Needs community, even the Epilepsy support groups there are as many varied parents as there are children. Some parents tend to take it all with stride, on the outside it appears that they have it so together it makes you wonder just how they do everything they do. Others are so fragile, you pray that the next moment will be met with relief as you just feel that they cannot possibly handle another thing. I tend to be somewhere in the middle, at least I would like to think I am.
 

 I remember when Brett was 2 and I found out that his “never-ending sickness and reoccurring respiratory infections” was actually asthma. I remember how traumatic it was for me to watch as they pricked his little back 25 times to do the allergy test. For me as a parent, before that moment even with four older children at that time, that was the most traumatic thing I had ever experienced with my children. The first time he had to be rushed to the ER because he couldn’t breath despite the treatments at home was more than I thought I could bare… Not because I couldn’t handle it, but because to me it was the worst thing ever. My reality, my world and my perception was shaken and changed forever in under 15 minutes…

It was as if the whole world stopped….. In one split second.

In S L O W M O T I O N….
I watched in horror as he laid on the floor jerking, foaming at the mouth…. His Daddy with him talking to him, calling his name… 
Brynnon, Brynnon…. Oh GOD please help him… I think it’s a seizure… 
He’s not breathing… I am screaming to the operator… 
Flagstaff Street…. F L A G S T A F F Street… 

Oh my God, please Abba Father…
Please help him breath… What is happening…. Oh God please make it stop……. Flagstaff is on the left…… Oh God please hurry…… 

He is breathing…… He stopped Jerking……… He won’t wake up…….

Thank God the ambulance is here…

 A
h, now this was different territory than I had ever experienced. To see your child with eyes rolled back, turning blue, shaking and not knowing what is happening… that is by far the scariest thing I had ever experienced. My perception of the event in that moment was a billion times worse than it was. Simply because I had never experienced anything like that in anyone, or my child.


Brynnon….. Brynnon….. Oh GOD Please No…….
Screaming for help, no one can hear me…. 

He’s not breathing….
HELP…. Okay, I can do this… Turn him on his side….
His Daddy comes… Gets on the bed with him… Holding him……
Time always seems to go so S L O W L Y….
911… My Son he is having a Seizure….  
He is not breathing……..
He will be 11 tomorrow…


Over  the years, my perception has changed some… I am still terrified when I see a Tonic Clonic seizure, but as long as it stops before that 5 minute mark I can handle it pretty well. Once it reaches over 5 minutes my adrenalin runs wild and I am scared to death that he will not come back to us. The Complex Partial and other seizures I can handle a bit more, those too scare me after the first minute or so. I guess because I have seen so many, your tolerance grows as with any other thing. So when you come across a Mom, a blog, a support site and you are tempted to think that person is making a mountain out of a molehill… remember that everyone’s mountain is different.


I think Brynn is having a seizure… The words echoed in my mind…. 

Handing Abigail to somebody…  I can do this…
TIME… What Time Is It?????? 1:39 AM…. 

Oh GOD he is not breathing… Call 911, we are supposed to wait…

TIME??? 5 Minutes…. He is still not breathing…

His lips are blue… His chin is BLUE… CALL 911….
He’s not breathing…….  I am Suctioning his mouth… 

He’s still not breathing…. Oh Father please let him Breath…

Okay time he is breathing and lightly jerking…. Time…. 12 minutes….
He is going into another seizure I think… Okay, Brynnon stay with me… 

He is having another seizure I think… and another…
Fire Department is here… Ambulance is here… 
A shirt…
I can’t believe I forgot his shoes….

I have had people express that they don’t know how I do all I do, when I feel like it will never be enough.
I too have had a family member look me straight in the eye and say “There is not a GD thing wrong with that boy.” and another say “He’s not retarded, if you keep treating him like something is wrong your gonna make him retarded.”  Ignorance abounds in every area of the world. In our families, in the grocery store, in schools, even in the very Special Needs Communities that are supposed to help and support hurting parents. Some people think that all children affected with Cerebral Palsy are severely intellectually disabled. Some people think that all children that are Autistic are completely non-verbal. Some people think that all persons with Epilepsy will be intellectually disabled. Some people, even physicians, think you cannot have seizures while sleeping.  Some people think there is only one degree of intellectual disability. Some people just do not think. They assume that they know what they are talking about, refuse to take the time to learn anything… because to them your mountain is just a molehill. Nothing you could ever say to them will change that… 

 So let the tears of that hurt roll off that mountain and eventually, it will create the most beautiful garden for you and your child to sit in and explore all the beautiful flowers that the Father has created in His awesome wonder and perfection

Each and every one of those special children whether disabled or seen by the world as perfect are indeed perfect. God does not make mistakes… and even if you feel like you cannot handle the mountain in your life. I can tell you with all certainty, that God knows your mountain and He would never give you more than you are able to bare. Every parent has their own mountain to deal with on a daily basis. Some more scary, some more life threatening, some more stressful, some more life altering than others… but never forget… all are traumatic to that parent. Yes, your mountain may be a Molehill to someone else and even more shocking your Molehill may be a Mountain to someone too… Just remember…
“I can do all things through Christ (Messiah) who strengthens me.” Philippians 4:13
 


 

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It’s been a while!

It has been a while since I have taken the time to update here. We have been busy with home school and a few other things. Brynn has finally tested at a 1st Grade level in all areas of Reading. We have worked really hard on Inferring, Context Clues and Reading Comprehension.

This has made a bigger impact than he has experienced to date in his learning. It is a beautiful thing to see he figure out a word based on context and his confidence has grown so much that he does not hesitate to guess a new word or one he can not decode. He seems to have lost some decoding ability along the way, so we will have to figure out how to get that balanced.  Brynn received a Hernando Bear, sponsored through Angels 4 Epilepsy and TG Bears. He loves his Hernando and sleeps with him. He is a good companion and as Brynn says he is his Epilepsy Fighting Bear. He was promised a bear through another organization months before his VNS surgery. He never got it, so I bought him another bear. He said he didn’t want to take it to surgery because it was not an Epilepsy Fighting Bear. Hernando is so special to him… Monica, the beautiful woman who hand makes the bears, said she put extra fight in his Hernandos stuffing! He cut out the sticker from the box he came in and proudly displayed it on his memory shelf. That shelf is full of beautiful memories… 


  Seizure wise Brynn has experienced an awakening cognitively since the introduction of Onfi stopping a lot of the little seizures that you can not see. The bigger seizures are still there, just not as often, which has made a difference in our lives! He is spending a lot more time talking and has had spontaneous laughter more and more. Silly boy, we have really enjoyed having more of the real Brynn back these past few weeks. Just before his Children’s visit last week, we saw a decline cognitively and an increase

in seizures. He had a runny nose, headache and was declining so quickly cognitively, I took him to the ER. It was decided there that it was an increase in seizures and allergies due to the high pollen count. We went to Children’s Monday. His neuro increased the Onfi from 10 mg to 15mg 2X Daily. This has already made a difference, and we will not start the daytime dose until Monday! We also agreed it was time to l et go of the Klonopin, since he does not need to be on 2 Benzo type drugs regularly. He was only on .5 before bed and it has been two years since he started it. I haven’t noticed a difference, except perhaps a little clustering, which seems to have been helped by the Onfi increase. I expect once we increase the daytime dose we will level out again. We also were able to attain the Zonegran Brand Name Medically Necessary again. I do wonder if he may have done better with the brand name when he started the Onfi. It was such a dramatic difference… I guess time will tell. This time when his VNS was adjusted he had no change in is voice, no hoarseness and no coughing at all. I kind of missed the robot voice all the way home… but I us am happy that he seems to have gotten use to the device. His VNS is set to 1.25 cycle and 1.5 magnet. Speaking of the VNS,

we bought this custom made band for his VNS Magnet from Kimberly’s Crafts on Facebook. It’s just what he needed as it fits his ankle instead of his wrist. The magnet will destrtoy any electronic devices, credit cards and so on that it comes in contact with. So we needed one for his ankle, when I could not find one I contacted her to make it! It came out great! His neuro once again said that we will likely not see seizure freedom with Brynnon, and that our goal is to keep seizures at a minimum for him while not affecting his cognitive ability negatively. I am anxiously awaiting seizure freedom, I will not loose hope that he will one day be seizure free. We are still only 6 months out with the VNS, perhaps before this honeymoon phase ends we will notice a difference. We will likely discuss trying to wean Vimpat next, as we are not sure what impact this medication has on his seizures either. No matter what we will not touch the Zonegran, having the month of August as a permanent reminder of just how much he needs that medication.
 

Brett is doing great with the Alpha Omega Life Pacs. It was a good decision to place him in that curriculum to allow more one on one time with Brynn, since Brett has the ability to work independently.
 

Abigail has begun to want to home school. We are working slowly on the Starfall books and preschool workbooks. Hard to believe she will be 3 in just two weeks. 


We had a wonderful day on Epilepsy Awareness day! Everyone wore PURPLE and it made Brynn feel so special that it was his day! So here are a few pictures of our lovely purple day!