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Saturday, February 26, 2011

Walking a fine Line

Everyday I must walk a fine line between contentment and hope. Less than 24 hours after I wrote the Happy Eyes post, I found myself teetering on the edge of a cliff I didn't want to fall off of.  You see, every day I must find this fine balance between being content and having hope.  Let's start with the Hope...
Several of Alexander's friends are having these HUGE developmental spurts.  When I say friends, I don't mean people we "know" from the Internet.  I mean people I have actually met, socialize with, and call on the phone.  One of our friends is walking unassisted (YEAH!), one is having an explosion of new words (YEAH!), one is having a growth spurt and suddenly eating lots of "real food" (YEAH!), and finally.... one of our friends is doing so much cool stuff - it is a little of everything - walking, eating, etc. Once again - (YEAH!) And these friends are not alone - Alexander himself is having a growth spurt, rolling some, sitting some, cooing some, giggling some. It gives me HOPE.  Hope that Alexander will walk.  Hope that Alexander will talk. Hope that Alexander will eat table food with us all.
If you only want to hear the positive part of this - STOP HERE.

Now, onto the contentment part.  There are lots of kids with WHS who do not do those things.  And I swear to love Alexander - no matter what. No matter what.  I don't want to wrap my self so much in the hope that I lose the contentment... I believe I have seen people do that.  So... What events happened specifically yesterday that threw me over the edge? *sigh* my own curiosity that killed the cat.

There is a blog started by a WHS parent. I like the blog and have been tossing around putting some of our posts up there. However, I am not 100% sold because of 1 thing.  I don't care for the emphasis placed on the mortality rate found in the information section.  Much of that research is outdated, and I knew I have read different numbers.  I opened up an article that I thought was going to give me better statistics, and it did.  There is also a lot of controversy about weather or not deletion size has anything to do with development, etc. In this research article I found, the overall mortality rate was much less, but they also looked at deletion size and mortality rate.  The article stated that the mortality rate rose significantly with deletions more than 15.3.  FYI.... Alexander's deletion is 15.32.  *sigh* I should have stopped there. I should have turned off my computer, gotten a Snicker's bar, and walked away.  But at this doesn't happen in my world. I now needed to know the deletion size of all of our friends.  I browsed their blogs and started researching the newest information about deletion size and development.  I pulled out a CD with biographical information on it.  I scoured the information looking for deletion size and development. (As if I could figure out something scientists and geneticists could not yet put their finger on.) I even went so far as to open up the file with information on children who have gone on to be with God - to look at their deletion. I couldn't stop.

This is because I wanted to determine how much Hope I should put into my mix of happiness. I wanted to also be able to determine how much contentment I should add into my happiness mix.  A good friend kept trying to stop me. She listened, then reminded me to stop.  She listened, then encouraged me to stop.  Finally - she listened as I told her I was done.  And I am done.  The research is all put away.  The hope is still there. The contentment is still there. I was afraid that I would be filled with so much "hope" - that I wouldn't be able to be content with whatever Alexander achieves.

I wasn't sure if I should post this - but God has a way of guiding you in the right direction.  Just this morning, another mom was asking questions ... so similar to mine. I believe this post might ring a chord with many others - so I wrote it.  We are ok. I am still content. I still have hope. I still walk a fine line.


At February 26, 2011 at 3:03 PM , Blogger Lauren said...

You research junky! I was the same way. Especially before I saw the evidence of "I AM MY OWN PERSON, MOM, AND STOP TRYING TO COMPARE ME TO OTHER KIDS - WHS OR NOT" in Norrah.

I found, from looking at actually kiddos we know, that deletion size doesn't seem to matter much.

Thanks for the post. Love the honestly and love the funny little things you throw in there too. I LOVE YOU.

At February 26, 2011 at 3:32 PM , Blogger Kisses4Kaylee said...

I love this post. To start off with-- YAY for all of our friends; I sure wish Kaylee was one of those who you described as having a spurt of some sort. In order to hang on to the hope we have for her future, Mark and I have decided to put a g-tube in Kaylee to help ensure that she gets the nutrition necessary to grow and develop to the best of her potential. I cannot help but fear that her lack of development is due to a lack of energy-- directly related to a lack of essential calories required for physical and cognitive growth. I also find that it is hard not to compare our children's development-- even when we know that each child is different (syndrome or not).

When it comes to research, I am much the way you are; in fact, I would love to know what CD you are referring to that tells of deletion sizes of WHS kids we 'know'-- whether personally or not. I have always wondered if deletion size matters in terms of hitting milestones, and while I do think it might make a difference in some unknown way, I can also reassure you that Alexander is making strides and doing things socially that Kaylee still has yet to do, and Kaylee's deletion in in that 16.1-16.3 it is obviously not the end-all, be-all explanation for these things.

When it all comes down, there is no way to anticipate what our children will or will not do. All we have is hope~ as long as we have that, we can make it through each day...right?

At February 26, 2011 at 4:25 PM , Blogger Kristen said...

Lsuren - I know... I know... I rarely EVER compare Alexander to anyone else. I was doing ok until I came across that article - which was on that stinking CD. And it made me a crazy person. I couldn't find the CD for the longest time - I think it is because I hid it from myself over the summer when I realized I was driving myself crazy. It was that article that just sent me RIGHT OVER THE EDGE. :( But... in all honesty - I'm laying here with my babe on my chest feeling all sorts of love. I don't really compare - I just don't want to hope too much that one day something is going to happen that I'm always looking for it. I don't want to miss opportunities to cuddle him because I'm forcing him to exercise so he can sit someday. BUT ... I also don't want to cuddle him so much he never has to work his neck muscles... If that makes any sense. I work really hard to find that ballance......
Laurie - I love that you read my bog and ALWAYS comment. It makes me feel so special!


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