Wednesday, March 19, 2008

Waiting for Hope

So Friday after the doctors appointment I was pretty upset and frustrated - not that there was anything unexpected about it, its just more of the same stuff. I went to the library by myself and looked up a ton of books on developmental issues, etc. One of them is Jenny McCarthy's book: Louder than Words. Its about her and her son's journey through autism. I am almost 3/4 through the book and its only been a couple of days since I started it. I was almost halfway when I stepped back from the book and asked when the "hopeful" part was coming because it was building up to that going through the horrible early stages including seizures, misdiagnoses, ambulance rides, her husband not being there for her or her son, wait lists, wrong medication after wrong medication (and the ensuing side effects)... I was feeling worse and worse. But I'm finally getting to the part where things are starting to improve through diet, supplements and therapy. I've really appreciated when she shared how hard it was to be around or even talk to people who's children are "normal". It just reminds you all all the things that your baby is not doing but technically should be.
I mean, Joe is delayed in just about every category they check for. He's almost a year old and despite us working with him, he still cannot fully sit unassisted, doesn't crawl or even push up on hands and knees, he rolls over sometimes but its pretty random and inconsistent, he makes very little eye contact but will follow an object briefly, rarely fusses, babbles some but doesn't say or even seem to comprehend words, he responds to music but doesn't respond to his name, we wonder if he even recognizes us. Everyone says not to compare your kids. So I tried not to, even though Nate was rolling at four mos, sitting at 6mos, crawling shortly after, walking just after a year. But, with Joe I have always told myself he was just a really laid back baby since he was so low maintenance, he has always been so content, not needing to be entertained.
None of the professionals that we've talked to has brought up autism yet but I've done some reading and am just trying to be proactive since it feels like this process is taking forever. I've emailed our herbalist and she says it sounds alot like what they dealt with when they had their son and she said with diet and supplements she thinks she can help. Friends and family try to be encouraging saying that Joe will be "ok".... define "ok". Is living with a disability for the rest of his life "ok"? Is the possibility of him never leading a normal life "ok"? I don't want "ok", I want my son to be WELL. I want him to be healthy and thriving. Is that so wrong? I'm so overwhelmed with all the "what ifs" and not really knowing for sure what we're facing here. I've read and been told that God never gives us more than we can handle... well, if thats true then I really wish he didn't trust us so much!

*If you haven't been following along the last few months - I have several other posts on my blog about the steps we're taking. Just pull up all the posts labeled "Joe".

2 comments:

sarah said...

Wow, what a hard road you are on. You sound strong and positive though. Joe is blessed to have such a proactive mom.

My Thoughts Exactly said...

Wani- My heart is breaking for you. We are praying for your sweet little Joe. I'm so thankful that he has you for his mother. I can't imagine the strain of not knowing and the pain you feel already even though you don't know the outcome. Please continue to the updates.