Our life dealing with Epilepsy.

Our journey started in July of 2002 our car had broken down and we went to go get it.We left all the boys at home.We got home and were told our almost 11 yr old son Daniel had a seizure and was at the E.R. at Mary Bridge.We raced over there and were totally freaked out.We knew nothing about seizures and Epilepsy.We saw the doctor who assured us he probably would never have another that it was probably a fluke.I later found out he was watching his brother play a car racing game on the computer,so I asked if I should keep him away from the computer and was told it probably wasn't related.We were given the basic instructions and sent home.

He was Supposed to stay up all night later that week for a sleep deprived EEG.He asked if he could use the computer and I told him to go ahead after all the doctor said it was okay.Five minutes later he had another Generalized Tonic Clonic (Grand Mal) we were so freaked out.We were told it was a fluke it probably wouldn't happen again.They were wrong and it happened over and over and over.

It's continued happening for 17 very long years.We met the Neurologist who I didn't care for at all and did the whole myriad of medications.A lot of them had horrific side effects.We tried the Ketogenic Diet,The VNS and even looked into brain surgery.Our son was having seizures so often more than I could even count.He also was having a lot of injuries and countless ambulance rides and hospital visits. 

People we were once close to didn't want to come around anymore including relatives,because they couldn't "deal" with it. It was so disheartening and lonely.

We also started noticing cognitive changes in Daniel.His sister Ariel started having issues as well in her case it started with cognitive decline at 9 it was very significant and seizures started at 12.

 His brother Michael started having cognitive issues as well and also started having seizures.His started at age 14.

 

Our lives since then have been filled with doctors,hospitals,ambulance rides,surgeries,medications,EEG's and a whole lot of injuries.More than I could ever share in a brief post.

 Epilepsy to me is so misunderstood and under reported People don't understand the significant danger seizures can cause.Both Daniel and Ariel were given Make A Wish trips meaning the doctor had to write that their seizures are life threatening.

It has been a very rough road that I wouldn't wish on anyone.There have also been rainbows following the storm clouds.One is seeing how my kids (now all adult age,but impaired) rally around each other when one is fallen and grab the rescue meds,the oxygen, the pulse ox, a pillow or a wet rag to wipe a bloody mouth from a bit tongue.I see the empathy and compassion they have for others,especially those with disabilities.

I see their eagerness to lend a helping hand if needed.I'm so proud of the people they've become despite all their difficulties.

Some of the toughest battles and some of the bravest warriors.

Hello friends,Our Caringbridge Family and the medical world has been hit so hard in the last year.We have lost so many precious children it is heartbreaking.

This journey has never been easy.When your child is first diagnosed with a long term medical illness you feel as if you have been literally drafted into the trenches of war.

You almost have to learn a new vocabulary,and a totally new way of life,but being in the trenches you get to know other families and other parents who are also battling along side you and a special comradery is formed.Even if they are battling a different war then you are.

You begin to feel each others pain and you hurt when they hurt.You celebrate the triumphs and you're also devastated by the blows of bad news.

There is a young man and  two special little girls that I am thinking of right now.A little sweetie named Melanie sadly lost her battle with her lungs and went to be in the arms of Jesus.

As did another little sweetie named Emily.Emily was very difficult especially,because we had actually met her in person.We met her and her mom Sara at Disneyland last year.To know Emily was to instantly fall in love with her.We had a great day getting to no one another and going on rides together.

A special young man named Billy sadly also lost his battle.These children are free no longer suffering and in pain,but their parents need prayers as they are heartbroken over the loss of their precious children.

It's also been really hard on Ariel,as her understanding is limited.I've wiped many a tears from her and was getting quite concerned with her sadness and so we decided to do something about it.we would never walk away from caringbridge.This has been one of the homes on the webs we've grown to love since 2004.Instead we made a memorial tree.Dedicated to all those we've known  whether in person or just talking with their families via phone or on the internet.

Ariel and I tied on pink and blue ribbons in memory of either boys or girls that had passed.We also put a cute little Hello Kitty for Emily,who loved Hello Kitty

                       And an adorable little frog for Curtis.

Here are more of the names on our tree:

                                      Billy Gerlach

Amanda Brady

                                  Reagan Joy Rodriguez

                       Chelsea Hutchison
(Her parents started The Chelsea Hutchison Foundation to bring people awareness of Sudden Unexplained Death in Epilepsy Patients of S.U.D.E.P.)

                   

                        Curtis Shubert

                        Donna Evans

                                     Jayden Kendrick

                         Haley Vincent
She could sing like a bird and actually had sent us a post card from the beach just a few days before she passed.That will always be special to us.
(Hayley's parent started The Hayley Vincent Foundation:To bring awareness of liver related disorders.)

                          Emily Evans

                    Samuel David Hovanski

                                     Melanie Canete

                           


                       Memphis Seaton

              Lindsey Steltenpohl & Eithene Hillard
            Two little girls that fought tough brave battles.

Jacob Duckworth A triplet and

One of the first Caringbridge kids we got to know.

                                    Nicholas Boggs

(His parents are raising money and awareness for Fanconi Anemia)  I loved listening to Nicholas on youtube.He loved The Lord and often sang hymns.

Ariel ready to release balloons on Emily's Memorial.

I think having the tree is a constant reminder of how precious life is.