Tuesday, January 07, 2014


"For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not harm you, plans to give you hope and a future." -Jeremiah 29:11

There are days, when I really wonder how my life and how everything that happens is really part of God's plan. I really believe that God has a plan for me, my family and for our life and that somehow some way it is going to do good in the world. I have to admit though, there are days that I look up in the sky and just say "Really?" or "Seriously?"  When do I have these thoughts? It can be something so small as Little J spilling his drink all over himself just before we're headed out the door for school. It can be all those times that Peanut J doesn't want to do #2 on the potty, or even when Princess J is upset because a silly (to me) code on her Moshi Monster game doesn't work. Sometimes I wonder just how much God is going to pile on our plates before even he says to himself...."I think this is enough!"

I am not complaining one iota here. Honestly! I am after all a "glass half full" kind of girl! I believe things can always be worse, I always know that someone out there just wishes they had what I have. So, I guess you wonder why I'm thinking about this.....well....I just want to know! 

Little J's diagnosis was devastating. First in that it completely changed what I (we) always thought our life would be like. We had this picture in our head of what our family was going to look like. When Little J was born, we looked in his eyes and saw an amazing little boy who we loved with every ounce of our hearts. Once he was diagnosed, we were a little frightened, but we still saw this amazing little boy. Secondly, in that there are always things in the here and now that we worry about. He cannot tell us if something is he sick, is someone not treating him well, is he just in a bad mood? 

When we got Josh's diagnosis, we were told several things, we were told about the medical issues in percentages that might or would affect him. We were told the things he may never talk (how heartbreaking that was to hear that I may never hear his voice say "I love you, mommy). Then on FB today a mom posed a question in a group about how we recieved our diagnosis. I saw some really painful diagnosis stories, and I saw some very sweet and uplifting stories. Our story was pretty straight forward, but as all the other parents, I remember every little thing about our Dr.'s office space where we were seated for the results. I can still see the photos that were on her desk, I remember a few of the books that were nearby, but most of all, I remember seeing our doctors tears as she told us the news. She was definately ahead of us as she had a plan in place for us to meet with specific doctors and specialists to ease us in to the transition of becoming a parent of a child with special needs. I am still to this day touched by her kindness and compassion and extra care. I still have the card she sent us a few days after our diagnosis handwritten with some sweet words. One of the specialists we saw was a genetic counselor and the one thing that stuck with me that she said was that children with AS appear to continue to learn in to adulthood. There does not appear to be a plateau for learning. This was good news to me!  One of the diagnosis stories from another family online I read, I thought was brilliant. This doctor told this family that it was not good news, but your child has not read a book saying what they can or cannot do because of AS and kids surprise me everyday. BRILLIANT! 

So back to my thoughts....I saw this bible verse on Saturday and then today I saw this diagnosis story and it just kind of fit together for me. Little J surprises me every day. Loading his IPad today and introducing it briefly tonight made me think what a gargantuan task we are about to embark, but I know he can do might take a long time...but I know he can do it! His impact on our lives is not always easy, but I see his impact on his brother and sister and see what kind and empathetic people they are becoming. They are both constantly trying to "help" Little J  with different tasks. Princess J understands that words hurt people's feelings. She hates the words stupid, dumb and any other version she comes across. She asks me why people are not being nice when we're watching a show or she sees someone say something at school. I see Princess J actively helping other kids she comes across....especially those with disabilities. So, I see God's work everyday in the simple actions of my children or the small forward steps Little J takes towards goals. 

It keeps me going everyday to know that all three of my children are going to make a difference in the world someday. The smallest action can make a big impact and that's how I see all three of them.

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