Sunday, January 23, 2011

my online support

“In the End, we will remember not the words of our enemies, but the silence of our friends.” Dr. Martin Luther King, JR.

That quote it so true and if you ask any parent or caregiver of a child or adult with disabilities they really understand.

Living with someone or caring for someone with chronic illness, disabilities, or special needs can be very isolating.

People don't know what to say so they don't.

Joe and I personally have experienced this. We have had family that won't call for months on end and when they do it is short and uncomfortable. We have lost friends and became very distant with others.
It is the nature of the beast.

I cannot tell you how valuable my epilepsy/infantile spasms support groups have been. In the beginning I was quite hesitant to join and talk. It is odd telling complete strangers personal things. Now they are family. We have a common bond that you can only understand if you have a child that suffers as ours do.
While most of us have never met in person we hurt for each other and rejoice with each and every tiny miracle that happens. When one of our kids is sick or having a bad day you can bet someone in the group knows and before long we all know and can pray and send well wishes asap.
My support group understands my fears and does not judge because they too have the same fears and understanding of how fragile our children's lives are.

My life has become consumed with seizures. All day everyday. Emily has them every. single. day.
I don't say that on my blog or update my fb status to say "Emily has had another seizure" but she does. We have had really good days but she cycles, she is currently on the bad part with lots of seizures.

If you or someone you know needs a group to join you can start out looking on yahoo groups, that is what I did. From there I found other parents on facebook and one of them started a private facebook group.

Some posted on facebook a list of what not to say and what to say to parents of special needs kids. I don't agree with all of it. Most people just don't know what to say. This is the what TO say list. You can go here and read the whole page it you would like.

- I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!

- I don’t know what to say to you, but I love you.

- How are you doing? (and actually listen to the answer)

- Quote from Elaine Hall: “How Can I Help?”

- Just wanted you to know I was thinking about you.

- I just made an extra dinner when I was cooking for us, can I drop it by now?

- I know you had an appointment yesterday, how did it go?

- Want to drop your kids off with us for an hour or so? (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)

- I’m on my way to the store, want me to grab you some milk or bread?

- Need any help at bedtime with the kids?

- I’m coming over to watch the kids right now for an hour so you can take a nap.

- We’re on our way to take care of the yard work.

- Sounds like you’re doing a great job.

- Here’s some things that worked for us. (preferably from people who “get it.”)

Mine and Joe's own that we would like to add is- Can I come over and learn how to help take care of Emily.
We would love to have someone be able to help us out every now and then. Besides Courtney, our nurse though the agency, we do not have one single person that can take care of Emily by themselves.
We need a break sometimes and we need to make sure that we take time to take care of our marriage.

The divorce rate among families with a child with special needs is 80-90%! I know that the divorce rate among "normal" couples is about 50% but add a child with lots going on and you are about guaranteed a divorce.

It is incredibly important to work on your marriage. I am so thankful to have such an amazing husband. I honestly know I would never in a million years be able to do this day in day out with out Joe. We fight and we are not perfect by any means but we all are Emily has. She needs us to take are of her. We need each other as well.

Will you please pray for my online support group. They have helped me more than they will ever know. We have a few kiddos right now that are pretty sick and having lots of seizures.

I love you my epilepsy family! As Keely put it-"your my glue!"


  1. I LOVE YOU!!!!!
    Hayesy and I are sending BIG HUGS to you all! <3

  2. I can't agree with Erica more on this issue!! It hurts so much to feel like we are going through this stuff alone. Silence makes us feel more alone and that's the last thing we want to feel when we are in the fight of our lives for our daughter on a daily basis.

    If you've ever wondered "what can I do?" please take note and don't be silent any longer!!! Even if the only thing you do or say is, "I've been thinking about you guys". Trust me, it is MUCH better than SILENCE.

    Oh and all that helping out stuff would be nice every now and then too! ;) LOL

  3. You all are always on my mind...always thinking of you always praying for you.

  4. Yes, yes, and yes!! I have a friend who has typical children and lives on my street. One day last week, knowing that Emily's seizures are out of control and I was stressing out, she showed up at my doorstep. She had dinner for us. Starting with salad, the entree, and even dessert. I cannot explain how amazing that was! To not have to cook that night, to know that someone is really thinking about us and wanting to help .. it was incredible.

    I wish we lived near you. I would love to come take care of Emily for an afternoon and let you rest!

  5. I've been a part of a forum since I was pregnant with Kailyn and I can say that these ladies know more about me than most people. It's amazing how loving, supportive and amazing people you've never met can be. I'm just sorry you guys don't have a larger in real life support group. But I am glad you have a place you can pour your heart out without fear of judgment.

  6. I so wish that we could help more. I know there are meals to cook, dishes to wash, laundry to do, house to clean, and yard work. These are all jobs to do while taking care of Emily. We have seen the two of you taking care of her. No one has a clue of your daily schedule until you see it with your own eyes. The two of you are amazing! We love you...Brenda and Lonnie (dad)