I have an admission. I’m anal retentive justabit. So, for this post, since I am having a hard time organizing my thoughts, I will bullet the highlights. And WordPress allows me to bullet. Score! Bear with my and my type-A mind.
We (me and Em) had breakfast on Saturday morning with 4 other people from our Focus Families group. Score! 2 we had met before, 2 we had not. It was a crazy busy breakfast, but fun to learn about new friends, and catch up with old. And the highlight of that breakfast (can I sub-bullet? no I cannot) Marshelle got Emma got swallow her capsules!! This is huge news. Huge. And she didn’t even have to convince her, bribe her, or sit on her! Score!
We went to Stuffington Bear Factory and took a tour and built our own bears with the whole group. So fun!!
The girls (Emily, Emma, and Jewelia) and their bears!
We spent the afternoon at the hotel with Marshelle and Karen and their granddaughters. Girls were so cute together. Seriously cute. Marshelle and Karen and I caught up. This is where my former tweet and facebook post about being with people who 100% understand you comes in. Right there. No explanations needed.
We got to visit the exhibitor hall. Let me just tell you about it. I’m at the ACB (American Council for the Blind) convention. The exhibitor’s hall was full of blind people everywhere! Of course I expected it, but to experience it is something else! Canes, guide dogs, human guides, everywhere! We didn’t really find anything for Emma, as she really doesn’t need any visual aides. I’m glad we went, though! Girls also got to swim in the pool in the afternoon. It was hot!!
Dinner was SUPAH! I felt bad because they wanted authentic Mexican, but I only know good places up by us, not in Downtown Phoenix. But I got the name of a place from a friend of my Mother In Law. And it was fabulous! Authentic, delicious, and everyone was impressed! Score! The only thing they need to improve is their margaritas. I’ve had better. Just sayin’. Ooh, I should’ve tried a michelada though!
This morning was another breakfast with the gang. So much fun. Unfortunately Marshelle, Karen, and the girls head back to California today. It was a quick weekend for them. I’m hoping to meet up with Sarah this week, but we’ll see how things pan out. It’s a lot of driving from my house to downtown.
All in all, a wonderful weekend! We had so much fun and it was great meeting people that really do mean a lot to me. I don’t know if they realize how positively they affect my life! They’re like a breath of fresh air! I still need to tell you about Marshelle…she’s a hoot! And a hero!
This guy is amazing…I love his tenacity and determination. And I would love to see him on tour! And…did you know he’s a Christian? You can visit his website here. Check out this video first, though.
I received this email about 11 months after Emma was born. I was searching for it today to pass on to a new mom in the group. She is struggling with issues like guilt and being alone. I thought I’d post this on my blog because these words are inspirational in general, but especially if you have a child with special needs.
Every couple months we start doing this on this list -where we brainstorm a multitude of possible thingsthat may have caused this rare condition of SOD/ONH and talk it out. I know we all want so much to be able to blame something or someone, but in reality what does its matter? If they ever figure it out the only thing we will have is the knowledge of what happened – there won’t be a cure or the power to change it. In the end things will still be the same for you and your child.
I want to offer you a different way of looking at it. What if you DIDN’T do anything wrong, in fact YOU did everything right! Yes Right! Maybe these beloved children were not supposed to be born into this world, maybe they were all supposed to be miscarriages or stillborns and because of all the medical technology and better health care they were able to overcome. Maybe you ate well, exercised, got fresh veggies,drank water, took your vitamins, went to all your doctor appointments, loved and wanted them!, etc. and because you did – The impossible happened! This wonderful child of yours survived – beat all the odds! Take a look at all of the babies born so very early and the long list of birth defects that keeps growing. Maybe its not a sign the world is worse. Maybe it’s a sign that they can do so much more medically to assist them and save them. It’s a sign that we are actually getting healthier. Take a look some cancer rates are leveling off and people are living longer!
I don’t think finding the cause will change the world; I believe the people on this list will change the world. Look how extraordinary you all are! We are a list full of people, who exchange ideas to help each other, we are raising our children in our homes and caring for them the best that we can, we are making the rest of the world take note and change to accommodate. We are changing people’s attitudes about what it means to have a disability and how the personwith the disability is still a beautiful person like everyone else. We are teaching the world that people have VALUE.
When I look at this group I see extraordinary people from all over the World! I see moms, dads, grandparents, etc. committed to raising children they love. They are leaving a legacy. I am extremely touched and blown away by all the adoptive parents who have given of themselves to care for a child that others didn’t want to love. What a selfless act, I know you don’t receive applause from others in thisworld, but I will be your one woman cheering section! I see grown SOD/ONH adults who share their life stories and challenges with us, trying to give uswisdom, insight and even comfort in the future of our children. They are an encouragement to me! They are just like all of us wanting love and wanting to beloved by someone. They want the best out of life justlike us – we are all the same and we all walk in each other’s shoes. Our success in life won’t be measured by fame or money- it will be measured by each of our children and by what we leave in them and others – that’s our legacy.
I do go back to read this email every once in awhile when I need a pick-me-up. It works. I encourage you to print this out for those days when you have that dark cloud looming above. Or to copy and pass it on to someone you may know who needs some cheering. This is a tough road we walk and any time you can cheer yourself up, take advantage! And breathe a little easier knowing that we are doing an amazing job!
