One Year Ago

One year ago we learned a new word Leukodystrophy, one year ago we learned our lives would change forever, one year ago we heard the words terminal, no cure or treatment, fatal in childhood.  

One year ago we started our fight to save our son, one year ago we lost hope and had to learn how to regain it. 

One year later we at thankful for each day we have, one year later we are thankful what seems like slow progression, one year later we are thankful for great therapy, one year later we are thankful for all the love and support we get daily.  

One year later we pray for progress in research, one year later we continue to pray for a miracle, one year later we pray to see our boy run again, one year later we pray for another day.  

Independence

As I supported Reed at the kitchen sink the other night because he wanted to play washing the dishes, I couldn't help but think of how I wish some parent would experience a child that lacks the ability to have some independence. Don't take this the wrong way I am not saying they are lucky and we are not, besides the obvious I would never change a thing about Reed.  But it is a hard thing for him to do much of anything without some form of help because he lacks the ability to walk and get around, this is when I think other parents probably take their child independence for guaranteed.  All he wanted to do was stand on a step stool and play in the water but he doesn't have the ability to stand so I stood behind him and supported him so he could "stand" there and play in the water.  I could have modified the activity and got a tub and put water in it for him, but that was not what he wanted to play.  He likes to clean and he wanted to pretend to wash the dishes like mom and dad do.   It just got me thinking about how I cherish this time with him because outside of the given situation of this disease this would be something he could do on his own most likely and I might be off doing something else and not having this one on one time with Reed.  Yes it would be nice at times to be able to be off doing something else while he plays but Reed has never been one to play by himself and is always close in tow, crawling or asking for us to hold him.  So independence its a double edge sword at times I crave it for him and wish for it and at other times I have to sit back and remind myself to relish in the play time with him.  Obviously outside of the disease I would wish for his ability to walk/stand and have play independence if it wasn't for the diereses.  

Potty Chart

Reed filled his potty chart and was very proud of himself!!! He was really excited because now he gets to go get a new super hero!! Potty training has been slow progress but he is doing a good job and working hard at it. Before he wouldn't even let us put undies on over his pull-up or diaper but we have gone three days now where he has been excited about putting them on. He does a really good job of telling us when he has to go number 2 and is getting better at telling us when he has to go number 1, sometimes the timing is a little off and he tells us while he is going but we see it all as progress. It is a lot of work to get him on the potty and we know that it might be something he just can't control or might lose but we won't give up on him and keep giving it a shot!!