Honestly

So not to be a downer but to be an informer. So to those of you who have never had a disabled family member let me point out some things that are annoying to those of us who do.
1. Don't diagnose our kids. And with that do not just assume that syndrome means genetic.
2. PLEASE do ask questions instead of staring. I myself have had to learn this since my dear Joe was born. I now can ignore most stares but I do get a kick out of how so many kids are staring while their parents who are just as bad act as though you do not exist. I am not an attention seeker but I also do not care to be looked right through.
3. I admire people who can get over their feelings of awkwardness and approach us (as long as they don't diagnose Joe). I actually feel bad saying this but I liked the excuse of saying, "He has cancer". verses the, "He has a syndrome." With cancer people let it go and with the syndrome they start playing doctor.
4. Please do not say you are sorry for us. Why would someone say that when there is nothing to be sorry about. Joey and I are grateful for Joe and wouldn't give him up for anything. Sorry can be translated as to you saying you are glad that you don't have a child like ours.

As a disclourse I should say that I am not saying this out of bitterness only to be an informer. I love getting to know people and hope that people will not be offended by my comments. I actually laugh about these things.

I realize that I am not the best at any of these things when it comes to others, although I don't stare and I don't ignore I smile if we catch each others eyes. I've been know to approach and talk and ask questions, and I rarely assume that I know more than they do. I am a person to give advice, but typically it is to new moms and my biggest advice is to do TONS of tummy time. I am no physical therapist but I have had two of my kids sit, crawl and walk early. Now if only I was better at teaching speech.

One of the best examples to me of how to act when you are around someone who has a family member with obvious disablities was one night Joey and I took the kids to Los Hermanos and the lady at the booth next to us never stared or ignored but minded her business and then when we were both done with our dinners she turned around and said how sweet of a spirit Joe has and then shared her story of having a brother with downs syndrome and how it affected her life. I then was able to ask her questions about how she felt because I was having a hard time with guilt for having had Sophie and not being able to give her all the attention I felt she deserved. That night changed my life for ever. I will probably never see her again but I know she was sent there for me. And we never go there and she said she never goes there too. We both went really late and I know that she was sent from Heavenly Father to help me to heal me of my guilt for having and wanting more children. One ironic thing about her situation and ours was that her brother had cancer too and she and her brother were the same age diffence as Joe and Sophie. She said that having a brother with disabilties made her a more loving and compassionate person and that is how I want Sophie to be.