Thursday, February 21, 2013

What I wish I had known to say to our oldest child without hemophilia when our 3rd was diagnosed:

Eli and Isaiah around the time Eli was diagnosed
 with severe hemophilia (Spring 2008)

"Hey, buddy.  I want to talk to you about your baby brother.  Daddy and I just found out that he has something called hemophilia.  I don't know a lot about hemophilia yet, but I am going to read some books and talk to some people who do know a lot about it so I can learn.  You will learn a lot about it too.

"Sometimes, hemophilia might seem a little scary.  See, when Eli gets a boo boo or bumps his head too hard, we might have to take him in to the hospital so they can give him his medicine.  He may even get hurt when you two are just playing.

I want you to know that that's just how hemophilia is and you don't need to worry.

"Treat him the way you know you should treat anyone.  Remember:
-No hitting with your hands or anything in your hands.
-No kicking.
-No throwing toys at anyone unless you are playing catch with something soft.

"As Eli grows up, you will be silly boys together, have pretend sword fights, run, and play super heroes.  Don't let his hemophilia scare you.  Mommy and Daddy will take good care of you all.  Eli is so blessed to have you as his big brother.  You are already teaching him so many wonderful things!

"I have one new job for you, okay?  If Eli gets hurt and you see what happened, it is really important that you tell Mommy or Daddy or another grown-up exactly what happened.  You need to be really brave and tell us even if YOU hurt him.  Don't worry about getting in trouble.  We will be very thankful to you for telling us the truth.  Then, you can help take care of him.

Eli and Isaiah August 2012

"Here's some great things you can do to help:
-Go get an ice pack from the freezer.
-Put on one of his favorite shows to cheer him up.
-Get him his favorite toy or blanket.

"I know this is a lot to understand right now.  You can always ask me or Daddy anything you want to know.  If you ever feel sad or angry, you can always tell us and we will listen.  You are a very special little boy, and I am so glad Eli has you."


  1. Beautiful! How important to realize how Isaiah worded Eli's condition so early, "Our family has hemophilia.". Even as young as he was, he realized the impact this has on each of you. That is the wonderful part of being a loving family. The burdens are shared so no one goes through it alone, but also the blessings are shared so they just multipy over and over!! Sarah this is what I see looking in on your beautiful family! You not only share with your core family, but with countless others through bubble wrapped birth. I have seen the influence this blog has made in others. You are doing a great job, giving your time to help others who may be overwhelmed by learning their little one is facing the challenge of hemophilia. God bless you honey. I'm thankful God gave you Matt and each one of your children to make this world so much sweeter! God knew what He was doing when He gave Isaiah to you first. He is a wonderful young man. I'm proud of you Sarah! Love, Mom

  2. I was so excited to find this blog! My son's best friend has hemophilia and I have been trying to find good ways of explaining to him why he can't be rough or why his friend can't play today. I plan on using lots of info i've learned from you to help him understand :) Thank you!

    1. That makes me so happy. I hope your son has a better understanding now. :)


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