People try to understand, they try to sympathize with our struggles, but unless you've been here you simply can't imagine what it's like, nor should you. I stay behind these four walls of our home, our safe haven, germ free, not wanting to leave and people don't really understand my fear for leaving. I have not become agoraphobic, but every time I leave the house, without Kaleb, I fear he'll be gone when I get home. It was best told by another family who lost their daughter shortly before Christmas. She told about a piece from a book called Life After Death which is about a daughter dying of cancer but, "she could not die with her mother around. Her mom wanted so badly to keep her here. The daughter had visited the angels so many times already, but she just could not break her mothers heart by leaving and her mom would never leave her side. Finally when a nurse convinced her to take a break - to go home and shower or something the daughter was able to leave...". I could not have worded it better, that is why I hate leaving him. This is the same reason I have trouble getting to sleep at night, if I close my eyes, the next time I open them, he may be gone.
I have spent a better part of the last two years living under the shadow of the darkest rain cloud in the sky, just waiting for the bottom to drop out and drown me in rain. Living with a terminal diagnosis and watching this disease slowly rob your child of all of his abilities is devastating. Knowing what is going to happen but not knowing when causes me to live almost every day in fear. Oh sure, for a little while, when things are going "well" you can almost get complacent, but every time there is even the tiniest bit of a cold, terror wraps its hand around your throat, and you can't help but think, "is this the last time I'll get to hold him in my arms". That very thing just happened to another family, they lost their beautiful daughter to Tay-Sachs. As with all of us, we know our children are dying and, maybe it's just me, but I have it in my head that I'm going to know when it's time, that there will be a sign, he'll be sick, or his body will show signs of shutting down. But, that is just not the case, it doesn't always happen that way, and that is a frightening thought.
People try to understand, they try to sympathize with our struggles, but unless you've been here you simply can't imagine what it's like, nor should you. I stay behind these four walls of our home, our safe haven, germ free, not wanting to leave and people don't really understand my fear for leaving. I have not become agoraphobic, but every time I leave the house, without Kaleb, I fear he'll be gone when I get home. It was best told by another family who lost their daughter shortly before Christmas. She told about a piece from a book called Life After Death which is about a daughter dying of cancer but, "she could not die with her mother around. Her mom wanted so badly to keep her here. The daughter had visited the angels so many times already, but she just could not break her mothers heart by leaving and her mom would never leave her side. Finally when a nurse convinced her to take a break - to go home and shower or something the daughter was able to leave...". I could not have worded it better, that is why I hate leaving him. This is the same reason I have trouble getting to sleep at night, if I close my eyes, the next time I open them, he may be gone.
1 Comment
amanda fernandez
2/22/2012 02:28:40 am
hello my name Is Amanda. Me and my Husband just found out that our son Alejandro has Sandhoff . we found out 2 days before christmas. it hurts so much to see him this way. my poor baby boy has had it hard ever since hes entered this world.
Reply
Leave a Reply. |
Archives
March 2016
|