Showing posts with label #adraynlove #epilepsy #superwoman #grateful #awaken #lifeisshort. Show all posts
Showing posts with label #adraynlove #epilepsy #superwoman #grateful #awaken #lifeisshort. Show all posts

Thursday, May 28, 2015

Next Stop, Normal and Perfect.

Yesterday marked one year of Adrayn's journey with the MN Epilepsy Group.

Jeremy and I have had our issues with this group in regards to not allowing Adrayn on the Ketogenic Diet initially because they thought it was too much work for us. Then after repeated harassment on my end, the Doctor submitted and allowed this to happen (months later). Then, our lives changed.

As part of the typical medical world, this clinic requests annual testing to make sure that Adrayn is staying on track with his learning, and that the seizures did not cause damage to him cognitively.

Well... his check-up was interesting... three hours of  testing for my little man, and endless questionnaires for Jeremy and I.
We literally filled out 3 pamphlets with 60+ questions that were all the same, but said differently. Why? Does the Doctor think he'll catch me in a lie? Then... we hit one question that still burns me.

"Is your child perfect in every way?"

Wow.. really? I like that Jeremy wrote "What does this even mean??" next to the question (one of the many reasons I love that man).

Anyhoo... Adrayn was just getting over a head cold, so I'm sure being forced for 3 hours to answer questions like: "Which picture has a boy", "Jump on one foot",etc. he was ready to hit the road.

As Adrayn was in one room, Jeremy and I were taken to another room where a Child Psychologist was updating us how he was doing on his tests.

"We want to make sure your son is normal, and that he can do the menial tasks that are needed in life. At this time he does not hold the attention span like a normal child would his age to do these "boring" jobs that we put in front of him."

Normal? Is it normal to do a task that has no purpose, just to please someone?

Jeremy's response:
"Our son is home schooled, and he will not be testing the same as the other children because he is taught differently... he leads us. This month he wants to learn about letters and numbers, so we are opening him to that world. We are not forcing him, he is asking."

That is the beauty of learning. Want... curiosity... it keeps us young. I am re-learning many things in my life through and with my children... and I love it!

Adrayn is far from any kid I have ever met, so I guess he's not "normal". He is truly unique in every way possible. He will never fit a mold, or be "perfect in every way". I love that about him... and I love that about everyone!








Mucho Love!

Monday, July 14, 2014

AdraynLOVE

I am a lady with superstitions. I fear that by saying things are going well, that I may somehow have a super-power that throws it all off... So I will just say that things are better than they were pre-diet.

Pre-Diet:  Typically Adrayn would have 1-2 Grand Mal Seizures every 4-5 days, and 0-100 "Drop" Seizures daily... 3 out of 4 weeks.
Post-Diet: His last Grand Mal episode was scary... he had 4 in a 24-hour period, that being said... it was on 6/21 (3 WEEKS ago!!!), and his drop seizures followed for less than a week. He will still have a day with a few drops, but NOTHING like it was!






It's odd... walking around, feeling more freedom from the beast that is Epilepsy. By no means am I breathing freely, but I am much more relaxed... and boy am I getting more done.
To somehow put into words what it is to find out that your child has Epilepsy... well... I don't know if I can do it justice. I guess I felt trapped... sitting by my child, hip to hip for the last 6 months. I didn't want him to face this alone, so I sacrificed myself. Sleep, nutrition, sanity... you name it. Not too bright, but I guess I'm learning as I go, and let's face it... the pool incident last summer has shaken me to my CORE and I haven't been able to let him go too far since. I am working on it..... and will go further down the rabbit hole once I can step back and take it all in. 

I must admit that Pre-Epilepsy I would have more "I'm tired" days, and "I'll do it tomorrow"... well, no more! EVERY day is a question mark, so when we're on a good streak I GET SHIT DONE! I am super woman... and after everything that I have faced the past 365 days I am seeing that I CAN do more than I had ever imagined!
With the loving support of my husband, I can make time to love my family, measure and concoct special meals 3X a day for my son, nurse and cuddle my little baby girl, shop, clean, have dates with my step kids, AND run a business!!! What? Yes! Can I get an AMEN!?! 

Adrayn has shown me so much about myself this past year... mainly, that I am MUCH more capable that I had ever dreamed.
So, in the last 365 days I have GAINED 500+ gray hairs, and LOST about 30 pounds. Not the best way to lose those extra baby pounds, but I don't get too hard on myself these days. 

Thank you Adrayn... If this never happened to you, I would never have seen this strength and beauty within. I would have never known how much support I have from ALL facets... (Babysitting, video monitors, car repairs, neighbors hugs, and California 'goodness'), we are blessed....soooo blessed. 

We. ALL. are. 

Take this time.. this very moment to realize how amazing you are. I was blind, and then Adrayn showed me... maybe he will show you too.




Mucho Love!