Monday, November 14, 2011

It's been forever!

I quit writing because I wasn't getting any new members or feedback on what I had written, so I just stuck to facebook where the majority of people who keep up with Vance look for updates daily.  It's funny if I am not on there at least every day I get comments asking if every thing is ok with us.  Here I could go months without a comment, but Vu asked the other day why I hadn't blogged in a while, so I figured at least one person is interested. I wonder how some moms with special needs kids manage to do this daily.  It's all I can do to change my one or two sentence facebook status every other day. I always thought that if I stayed home I would have so much time on my hands to do things I enjoyed or just relax, but it seems the opposite.  The work is NEVER done when you are a stay home mom of a special needs child. Not that I am not content. I think I'm finally there.  It was very tough giving up my career and devoting myself to a thankless job no one notices but me.  But love is about sacrifice and that is just one of the MANY lessons I've learned since having Vance.  I never thought my testimony could be stronger, but my love for God has grown deeper and my understanding multiplied.  I can't begin to tell you what my little man has taught me about the gospel, about Christ, about our Heavenly Father. Well, I could start, but I'd never finish.   On to the purpose for being here~ VANCE.  We've had nearly 2 years with him now.  In that time, he's had 2 heart surgeries, a stroke (TIA) affecting the left side of his brain, hundreds of hours of therapy, a few bumps and bruises and probably a million calories. :)  He finally weighs 22 lbs. Still has 6 teeth. And signs at least 60 difference signs. Pretty awesome especially since he was only signing about 10 in April. He started sitting up at 8 months, standing at around a year and was 19-20 months when he started walking.  Now he's working on running.  He walks backwards but still has trouble stepping over things. He loves to swing or slide.  He throws things which is nice when it's a ball but bad when it's an open cup or when he only holds it for a few seconds and we're doing therapy.  He is super independent now.  Too many hands on him for therapy so now he hates that. He also hates getting dressed or diapering. :( that's a major challenge!  He had his circumcision last December without any complications.  Glad we were able to get it when we did because medicaid stopped paying for them in January.  This December he will have his adenoids removed along with tear duct unblocking (not sure what the actual name of that is) and possibly ear tubes.   We will look at new heart cath once he gains another 10 lbs.  It feels like that could be forever.  He only gained 4 lbs in 6 months and is projected to slow down even more. This momma has to work on bulkin this boy up! So that's Vance at the moment. Hopefully I'll be better at this, but I always promise that and never live up to it.  All I can do is try though.  Something is better than nothing, :)

Monday, August 8, 2011

Out of sight out of mind

I guess I am like the typical person.  When things are going well it's easy to get so wrapped up in everyday life that things slip from our mind.  My blog has been one of those things, but not the only.  Randomly it will pop into mind that Vance for all his accomplishments (and yes there are many! :) will NEVER truly be over the hump when it comes to his cardiac issues.  He may be at a point where life seems normal, but anything could give at anytime.  We do the best we can to find ways of working around his heart defects, but you can't rebuild a heart like you can rebuild an engine.  For all the medical advances there have been in this area, there are still some things that are just left up to God to determine.  When I mention to Vu or friends about this fact every one wants to kind of head me off as if acknowledging it is asking for it to happen.  Leave well enough alone mentality.  OK that's fine I'd sure enough rather not think about it, but there's always something that pulls you in you know?  I am a follower of the Rachel Amariah blog.  I have been for some time.  I started following her because I saw so many similarities in the way her mom felt having to be faced with her child's mortality daily and how I felt before Vance's first surgery, at times even up until after his second surgery. Rachel had heart defects among other heath issues.  Her parents were told just as we were that she would live a very short time and that surgeries would most likely not prolong her life.  They took her home, just as we did and just spent everyday loving her, getting to know her, but always carrying the heavy burden of knowing that any day could be the last.  When you are in a situation like that it, days become hours, hours become minutes, minutes become seconds.  And there are 86400 of those in a day.  Anyone of them could be the one. It's a very overwhelming feeling.  Uncertainty of what you can and can't do during the course of a day.  Should I go to the store? Can I make it from a friends house to mine in time for Vu to see him before he stops breathing? Will he be able to leave work in time to make it home?  Should we try to schedule family holidays?  No I can't go to someone else's house and have something happen there.  No I don't want anyone else to be traumatized by being at our house if something happens.  If it did how would I tell everyone to leave?  These are the things that cross your mind.  Why is all of the relevant now when Vance is doing so well?  Because Rachel passed away. She lived 14 /2 months. Her parents just like us began to think of life as normal.  Everyday became a day just like every other. Although the were aware of their daughter's condition they had learned somehow just like we have to put that out of sight.  You can't live life like that everyday.  It becomes to so consuming that you MUST find a way to adjust and by not allowing it to stay in the forefront you are able to go on with life.  After a while, you just don't think about it anymore, that is until something happens.  To those of you who are blessed with health, remember death comes for us all eventually.  Just because you put it out of sight or out of mind does not mean it won't come. Be blessed and love each other everyday.