Friday, September 17, 2010

planning the wrong trip

So I just posted the latest results and for the most part the news is good. And what is really AWESOME is that Jasz has taken a few independent steps. The PT decided last week to try it because Jasz really wants to go. He can do a few passes now. He gets really excited so sometimes his top half is moving faster than his legs or visa versa...but it is super cute. and he gets so proud of himself. It brings tears to this momma's eyes. Today he did some long stretches between the two of us so he had to walk about 5-10 independent steps. YEAH!!! Now he can't stand up in the middle of the floor yet, he has to pull up on something, but we'll get there. But after about 3-5 times of this he was TIRED. He couldn't even pull to could just see his legs weren't going to cooperate. He could crawl...but a break was needed from walking.

So this brings me to my processing of yesterdays plethora of information. After telling the story a few times what had started off being excitement in my voice mutated into exhaustion. I think the person I was speaking with was frustrated a little because we all know the diagnosis could seriously have been worse. Someone sent me an e-mail (you know who you are) and gave me this analogy which is totally perfect!! Say you plan a've been planning for a year. And you plan to visit Ireland. You pack accordingly and plan what you're going to see and get your hotel. You get on the plane but when it lands, you aren't in Ireland you are in read the ticket wrong. So although the sights are beautiful and it's just as exotic a vacation, you have to totally change your expectations for your trip.

This is what I feel right now. Yes I have an answer and that is wonderful. Yes it isn't something totally horrible and don't get me wrong I am totally thankful for that. But I do feel overwhelmed. Imagine for a minute your child (if you have one). Imagine they were born with ropes tying their legs together. They seem unbreakable at first. Over time the knots begin to loosen and your child can move with more ease...but darn there are things he/she just can't do because of those ropes. So you go to an expert and find out those ropes are not removable. They will get looser and your child will learn to adapt, but those ropes will ALWAYS be there. Now tell me how you feel a couple hours after that realization.

I don't want anyone reading this to think for one minute I am ungrateful for the blessings we have been given. I personally believe that it is the devil that causes mischief in our lives not God. I am thankful everyday that I have accepted Jesus as my Lord and Savior as I know only His way will see our family through our storm. "Commit your way to the Lord, Trust also in Him, and He shall bring it to pass." Psalm 37:5. I also know there are others that I know fighting for their lives, and some hoping their suffering will end in whatever form that takes. I pray for all these to.

But please try to understand a mother's heart. You never want to hear your child can't do something because we always think they are a clean slate and can be whatever they chose. So as I said in the beginning I just have to rearrange my thoughts on this. The view is still wonderful and the adventure is great but I need to rethink the path I had planned. Please be patient and understanding and I will hopefully come out of my cocoon a butterfly!!

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