I want to share a part of what I said today. When I was writing my speech, I was having a hard time thinking that what I could say that would be helpful. So, I asked my family what they would say if they were in my shoes. Here are their answers.
Josh-"You have to protect her. If they ask if she is a boy or a girl, you have to stand up for her. Also, she will get more toys than you and you have to try not to be jealous or mad."
Ella-"It sucks, it stinks and I hate it, but you have to take your medicine so you can kick it's butt." She knows she is not allowed to say sucks or hate, but I think she knew she could get away with it for this!
Steve- "Ask for help before you need it. Remember this isn't about you, it's about protecting your family."
My friend Katie- "Forgive your friends. The may not know what to do or say and they may feel guilty that their child is healthy."
My advice was this.
Allow yourself to:
Not be perfect.
Be mad, happy, sad and cry when you need to.
Ask for help
Know who your friends are, and they may be new ones.
Find your faith. These people will hold you up when you don't have the strength and pray for you when you don't know what to say anymore.
Tell your family you love them and appreciate them. Do this often so that even when your time is spent with your sick child, they all know they are important to you.
Write it down. See this blog for an example:-) No one can ever really understand how you feel except you- so let it out and write it down.
Give your child control of something. They have no control over anything in this journey, so let them control what they wear, or how they take their medicine. We still have to smell Ella's feet every time she takes her medication, and that's okay.
I left them all with this quote, which has become one of my favorites since Ella was diagnosed. I think it could be said for every woman in that room.
Now for a little Kelly Clarkson who is playing in my mental MP3 player right now. Good Night and thank you all for your encouraging words.
105 days left. Time to start counting down.