Sunday, May 20, 2012

So Blessed yet still So Unfair

I have to start out like this... we are so blessed to be where we are and couldn't be more happy with Jasiu's progress. This weekend especially I felt just incredibly blessed how happy, spunky and ALIVE our little warrior really is. We had a weekend full of parties, two big 1st communion parties (one Saturday and one Sunday) and a 90th birthday celebration of my mom's uncle, we all call him Grandpa (he is the one who said the blessing  before our wedding 7 years ago).  Jasiu did wonderfully, took a nap before the Saturday party and was completely ready to go - smiley from ear to ear. When we got there and he saw the hall and the band playing, his eyes just lit up he was so excited and curious the amazement in his eyes was breathtaking. He is just so aware of the world around him. We managed to get through dinner fairly well and than the "dancing" started. He just tore up the dance floor - all by himself he went and danced and danced and danced, waiving his arms, and "dancing" in circles, sometimes bouncing his knees. Everyone was so amazed with his energy and how he wasn't afraid of the adults (probably giants in Jasiu's eyes) dancing all around him... ohh no he wouldn't dance on the sidelines, he needed to be on the middle of the dance floor.  See some videos below of just what I mean. Personally I think he gets his moves from his daddy :) When he wasn't dancing he was running after the other kids back and forth in the hallway. And most of the party he was in motion.

However, all that said, it is still so unfair, it's unfair that this child despite his biggest determination gets tired and winded so quickly. One song and I noticed he was out of breath, he kept wanting to run and was falling probably from tiring out. I would dance with him in my arms and he wanted to be put down. It breaks my hart that I had to pick him up and keep him from something that he wanted to do that most kids his own age can do for hours.. run around like crazy toddlers that is. .. without having any limitations.  One song and I noticed that he was so winded he was coughing uncontrollably.. we rested for a bit, against Jasiu's own will and again barely one song and same thing... I felt so bad that I didn't pick him up sooner to take a break that when he finally calmed down he began caughing again to the point he threw up (in the hallway, thank goodness and not on the dance floor).. but still it's so unfair that things he loves doing have to be halted and affect him negatively because of his heart and we can't do anything about it.  Despite all this after I cleaned him up, what did he want to do?... put on a happy goofy grin and keep going, but I called it quits and we headed home (mostly because we were both puke Stinky :(  ) I know life in general is not fair and I really shouldn't complain but for Jasiu it just isn't fair and I already think about the day I will have to explain it to him. Now seeing him like this makes me think that he will want to do all the things he may have restrictions on and then we'll have to cross that bridge when we get there. Just Unfair because from the outside he looks so "healthy" sometimes people don't even realize why I do what I do for Jasiu's own good.

Today again, we had the two parties and he was all smiles, giggles and dancing and though you can't tell from just looking at him, I know this kiddo is struggling. But God gave him such will power, energy and determination  that I hope he can soon learn his limits and Jasiu won't be mad at mommy for stopping his fun occasionally so that he can catch his breath.

Now for some videos of the fun we had this weekend. ( I have to end on a happy note.. after all we have so much to be thankful for and so many blessings.

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