Friday, July 29, 2011

The good....and the not so good

Life is such a wonderful mix of good and not so good isn't it? If life went along exactly as you wanted it you wouldn't be able to appreciate the truly wonderful moments. That is what I am finding anyway.

The last two afternoons we have had playdates. (is there a better term for this when your kids get older? the whole term is kinda odd) I got brave. I BROUGHT A~man despite the fact hubby could have watched him at home. When my son is around things do not go normal. That's a fact. I'm not complaining that is just how it is. Yesterday it was friends with a boy/girl similiar age but the boy didn't come. (was he afraid?hahah) We went to a park with a stream and the three played in the water. Besides some flatulance and crude humour on A~mans part it went ok. Not great. OK. I really enjoyed talking with the mom. I just hope she doesn't think flatulance is a normal thing in our home. ;)

Today was at another friends house with boy/girl kids similiar age. They recently lost their sweet dog and although I had told Z~girl I hadn't told A~man. He gets things stuck in his head. I told him that their dog had gotten sick and that he was NOT to talk about it with them. I let him talk to me about it...he was really sad for them and went in his room to look for stuff he could give them to make them feel better. I told him no that what he could do is not talk about their sweet it would have been him talking about it for 2 hours. OK I also bribed him a bit with game store tokens but honestly it just gave him something tangeable to focus on rather than the sadness. He did well. Did he behave like a typical child? no. But he isn't a typical child and he did the best he could.

Later on all four of us were in the car and out of nowhere he said "mama, thank you for praying to God that you would have a son." (both children know it took a long time for us to become mama and daddy) there was a pause and he said "thank you for letting me live in your house." *sob* and then he said something like "I thank God that he lives in my heart". This child has a way of just leaving me speechless sometimes. (sometimes for good reasons sometimes for bad;) I think part of it came from earlier he started asking about his bio grandfather he met ( a long time ago but he was nice and made a good impression)...then about his first mom (also nice just not capable of caring for him)...and her twin. Then about his first father. (I use that term VERY loosely he was not a father in any sense of the true meaning) It was a challenging conversation and it just seems like at 11 he is processing things around in his head. It would be challenging for a typically developing child too. We have always told him about his first family.

Well we get home and it is a pleasant evening and A~man is about to turn in early as he was tired. I smelled something. There is no mistaking Thin Mint Girl Scout cookies. So I ask him to bring them to me. He gets the wrapper sleeve. Then I ask him if he has any other food in his room. He must have been feeling really honest as he brought me a protein bar wrapper, more cookie wrappers, and 3 or 4 energy drink cans. My son drinking an energy drink is nothing short of comical if you knew the energy he has. It seems months will go by with him not hoarding food and we let our guard down and this happens. Was I mad at him? no. There was a time (short lived) I would have yelled about it, cried about it, practically banged my head on the wall about it. I can't do that. Right now I'm also at the point of not putting a huge weight of guilt on me and hubbies shoulders. Right now it is a "learn from your mistakes" sort of thing. With Prader-willi syndrome you just can't let your guard get down.

So that is it the good...and the not so good. All equal a very wonderful learning experience.


  1. Wow. There is a lot of emotion in this posting. My heart aches for Aubrey and the challenges he faces, and then again, I rejoice in knowing him (even if only from a distance). I have been known to hoard food, and I don't have a condition that makes me prone to do that. Just remember, when things out of the ordinary happen it is because he was created for such things and smile and do what you can to prevent it from happening the next time. Did you get on the review for the Apologia book "How to have a HEART for your children"? (I am not suggesting you don't have a heart, but this book has opened my eyes to so much about my child with asperger's.)

  2. I had to laugh at the visual of Aubrey on energy drinks!!

  3. Hey, I can't knock his taste, I can't pass up Thin Mints, either. :)

    I know there are some things that are harder for him to process, but let me tell you, that young man's love and understanding of Jesus and his love....well, it brings me to tears quite often. Yes ma'am, you have one special young man there.

  4. ((hugs)) It's always something special when our kids say something from the heart. Nothing on earth has the power of "mama, I love you".

    On the food, I have to laugh as tonight I realized that Joey had gotten very quiet. I went in his room and sure enough, there he was stuffing cheesecake in his mouth as quickly as he could. I hadn't even realized he'd snuck into the kitchen again. Earlier, Jaysen came out of his room puzzled as to why there was a can of tuna fish hidden in their room. Oh dear, I think that if we got Joey and Aubrey together we'd both be cleaned out of food. ;)

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  6. Joy-I love your heart and this post. Such a lesson to us all. The bad with the good and back again. You are a model of a humble and tenacious woman of unconditional love.