Support Not Advice

I came across a great blog this morning through a friend.  The blog is written by Annamarie Saarinen, and the piece I loved and could connect to the most is found below and on her blog which is located here  http://info.heartwaves.org/bid/132948/Collateral-Damage

“One of the great human tragedies of pediatric disease is the loss of friends, family, support systems. Again, no one can understand unless they have been through it. Nearly every day, I hear a heartbreaking story of how a best friend never came to visit the hospital. How parents, brothers, sisters...and yes, even spouses, just bail. Sick infants are not the things of story books and fairy tales. Tubes, wires, monitors, cuts, stitches, blood. Congenital heart disease is an abomination. No child should have it. Period.

But until the day when children suffer disease no more, reach into your soul to BE THERE for those you know going through a traumatic health experience with their child. BE THERE for those you barely know. And BE THERE for those you don't know. Suck. It. Up.”

I am sharing this portion of the blog because we have lost family and friends over this too and our daughter is not even born, but as Annamarie says for every person lost 10 more fill the space – that is so TRUE. To anyone going through this or that knows someone, it is critical that you not assume you understand, it is impossible - as most of us going through it are making our way to that understanding ourselves.

I had lunch with a great friend, Heather, yesterday and she said to me “I don’t have any words that will make this better, there is nothing I can say to take away your pain, but I am here for you”, I told her that was the BEST response ever. As we are not looking for advice or those to say the automated responses because they feel they need to say something. Not having the answers is fine and just letting the person know you will be there is enough. I have come to terms with the fact that people just don’t understand the magnitude of our lives now and that it ok, I need to separate my emotions from what others don’t understand –  but I am always willing to explain it if asked. The worst for me is hearing over and over from others that she will be fine, or that the doctors don’t know, or that maybe this will go away…because unless you know this for a fact and have gone through this, you don’t know. If you know the person is not religious, don’t preach to them as that feels more like an attack.

I will do whatever it takes to give Ryleigh a great life and one that is (unlike mine has been) drama free and no matter the extent I have to go to do it, it will be done. The best advice I can close with is just be there, give support, if the person doesn’t want to talk about it, that is fine but asking if they are ok or if they need anything are fine substitutes for a conversation.  Most of all have some compassion for heart parents and kids and know that it is not personal – unless you make it personal.

Be well all.