January 17th, 2014- The Reality Check

On Sunday I was browsing the internet and decided to check out the page for Carter's Run, the 5K that raises awareness for Dandy-Walker in Virginia (www.cartersrun.org).  While there I was looking at the tab about Carter himself.  He is now 6 years old and doing pretty well, but like most Dandy-Walker kids has had some issues and developmental delays.  He didn't crawl until almost 20 months (the age Ben is now- hard to imagine!), and didn't walk on his own until last May.  He also nursed exclusively for 14 months, because he has issues with swallowing and eating, therefore he now gets his nutrition by a feeding tube- he has feeding therapy so that he can eventually eat normally.  He has low muscle tone so he gets therapy for that and in his toddler years his growth went off (as in, under) the charts (but at 3 years old with the help of the feeding tube he was back on the charts).  However, he has never had hydrocephalus and attends school in a special needs classroom and sometimes in the regular classroom with the help of an aide.

As I was reading this, it made me nervous and scared.  As I've said before, every child with Dandy-Walker is different and develops different issues and at their own pace.  I feel like we've tried so hard to be positive about Ally's diagnosis that I am avoiding what may be the reality of the situation.  Since I have only dealt with healthy, normally developing children, I feel that I am setting myself up for major disappointment and heartache when Ally doesn't follow in her brothers' footsteps- and it won't be her fault!  She would be born this way and is very likely to overcome it in time, as Carter is/has done (as well as many, many others whose stories we've read about), but how will I handle and react to it when it does occur?  When she can't sit up at 1 year old?  When she can't walk until she's four?  If she can't eat without a tube or talk to us or play with her brothers appropriately?

At the same time, I feel guilty for even thinking this way.  There are so many children out there who have conditions that are much worse than Dandy-Walker variant with hydrocephalus.  Chances are good that Ally can live a very normal life; many children with worse conditions never have that hope, especially if their condition is terminal.  With all that I have been blessed with, focusing on what may be Ally's challenges seems so petty and selfish.

Sunday our pastor preached a sermon on dealing with depression.  It was a very good and timely sermon for my life.  While I am not clinically depressed, as he stated everyone deals with low times in their life where they may experience some level of depression.  I have been battling this since probably around mid-September.  Since mid-December it has gotten somewhat better due to some changing circumstances, but dealing with the results of Ally's presence and subsequent diagnosis has been a level all its own.  I meant what I said in my last post- I really am doing ok, no need to worry about me- but it doesn't mean that sometimes it doesn't get overwhelming.  One of the great things that our pastor said in his sermon was (and I believe it may have been a quote from someone else, but I'm not sure who) "we need to stop focusing on the 'what-ifs' and instead focus on 'God is'." 

This is exactly what God has been telling me for the past several months, and I felt that this summed it up so perfectly.  There are a lot of unknowns about Ally and life in general, but focusing and worrying about them is not useful- or faith-ful.  My God is greater than all of my problems, worries, or situations, including Ally's.  This is something I've had to continually remind myself of, sometimes just to get through the day or a certain situation that occurred during the day (even before I knew about this pregnancy).  I believe God is refining me and making me have to purposely remember to rely on Him and not myself.

I found this picture on Spirit FM'S facebook page and thought it perfectly pictured what we need to be doing!

We thank you for your continued prayers for us.  We have gotten results from  the basic genetic study from the amniocentesis (the one we did with blood work before) and the results were the same- no Downs, Trisomy 18 or 13.  I would appreciate prayers about a major life/home change that we are considering making, largely as a result of Ally's condition (though there are other factors as well), that God would show us what He would have us do and then work it out so that we can make it happen.