Dark Place

I’m in a pretty dark place the last few days, last night when we got home for the night Reed was very uncomfortable even in my lap he was still doing circles trying to find the perfect spot.  Then the crying started, heavy crying, red in the face crying. I couldn’t figure out what was wrong how to make him happy or comfortable, was he in pain and he couldn’t show or tell me. Does he even know?  I tried getting some Tylenol in him but he fought me on it and I just held him the best I could.  Then I started to slip into a dark place, feeling of guilt, feeling of I did this to him I gave him this disease my genetics is causing him to die.  Then I noticed his struggles to stand now, in just a little under two weeks Reed has gone from being able to stand and take maybe up to 10 steps to having struggles to stand on his own and some struggles with standing and holding on to something.  

How is this happening and why so fast all of a sudden is it the stress of doctor appointments that we are putting him through that is causing this quick digression or is this disease really going to move along this quickly?  I feel so helpless, I feel so hopeless, I feel guilt, I feel mad and sad, I feel sorrow, I feel for my little boy who doesn’t understand what is happening and probably never will. Sleep has not been restful for me the last few night and I lay awake and think which is the worst thing for me to do.  We started therapy today and watching my baby cry out to mama and struggle with what we all think of and take for granted as the simplest tasks like walking really sunk me lower. Watch him try to walk with the help of a walker today made me realize that my little boy will never walk again here on earth.  Therapy was good for him but bad for me, it will help him I believe and once he is comfortable with it I pray/hope that the cries for mama won’t be as often.  In my attempt to try and find some positives he is learning new words which is encouraging because I struggle with his frustrations and trying to figure out his needs, my hope will be that he will learn and be able to tell us his needs still or for as long as possible. 

With the dark days they are followed by good days, we started out the week really well two really good days in a row, Reed's personality was back he was his happy and playful self again. Which followed by a bad day maybe not so bad for Reed but hard on Jesse and I.  Today started out not so good with the struggles of therapy but we ended the night good, playing and having a good night together. Here is to the hope tomorrow is another good day, ONE DAY AT A TIME.

Here is today’s #stayingafloat2015 verse: