Friday, August 6, 2010


We all have them, if you have facebook then you have even more of them... I am talking about "friends". They are more like acquaintances really.

I had to un-friend someone yesterday. The person, on more than one occasion, has put on their status jokes about people with special needs. I usually just try to let it go and not get to me. Usually...

Last night was different. I saw their status and I tried REALLY hard to let it go but I just could not do it this time.

I had listened to a song that morning and one of the lines were "when I was weak, unable to speak..." and that line was stuck in my head and I looked at Emily and thought I have to say something. He has to know this is wrong and not ok.

I told him in the kindest way I could how I felt and fully expected an apology put instead I got the opposite. Without going into all  the details I will just say I am now one less friend on facebook. My heartfelt words just bounced off of him and unfortunately I feel this will not change him at all.

What hurts me the most is I know this will not be the only "friend" in life I will loose because I choose to defend my daughter who has special needs and not conform to a simple minded community who thinks it is funny to mock children with disabilities.

I am going to pray for this person and hope that his heart is softened and he will see what I was trying to say. I also pray these very same people NEVER have to fight wars such as these for their children.

We fight for so much for our kids from insurance coverage, nursing hours, medications, therapies, to the best schools for them. The last thing we should have to fight for is acceptance.

I am not perfect, nor will I ever claim to be. I am passionate though. Very passionate about my daughter and I will stop at nothing to give her the best life possible.

Oh and to update you on Emily. She has only had one seizure in the last 2 days and she is fully on food now. If she is awake she will eat at least some of the food and once or twice per day she will eat her whole meal. We have had lot of smile and laughing too!
She makes it all worth it.


  1. You and Joe are amazing and incredible parents to an absolutely perfect, little girl, Erica! God knew exactly what He was doing when He hand-picked the two of you and blessed you with your precious Emily. Your true friends in the Lord are here for you to provide you with love and encouragement. God bless your family ALWAYS!

  2. Emily couldnt have a better "voice" then yours :)

  3. Very glad to hear about the food getting switched and her siezure decreasing.

    It's unfortunate that there are so many small minded people in this world. So much prejudice and hate. I'm so very sorry that this is something you (and Emily) have to endure. As if what you are facing is not enough!

    God has given Emily the perfect advocate and voice for her!!

  4. I am sorry for the pain and heartache...

    I think our hearts tend to swell bigger and bigger for our special babies and there is no room for the small minded...with little heart.
    You are a fantastic mommy, and your baby girl is so blessed to have you fighting for her every step of the way.

    Glad to hear she is doing well.

    God bless...

  5. So glad Emily is doing so wonderfully!!

    I am super proud that you stuck up for Emily and children everywhere! It is a shame that this person chose to find humor in a place such as this. Hopefully one day he will grow up.

    Love to you all!

  6. People who make fun of babies with disabilities and who does not understand how heartbreaking this journey is for a "parent" is NOT a friend to begin with. You do not need "friends" like this. You have plenty of people who love you anyway.
    So glad to hear she's doing better.
    LOve you all,
    Grandma Mary and Grandpa Jeff Johnson

  7. Any updates on Emily? Hoping u are having brighter days. We are on the keto board so I have been checking up on what's happening with Emily via ur blog. Please know that your family are in my thoughts. I have a cp and epilepsy daughter so I know how each day can be with so much going on.

    Nicole from rosemead ca