This is one of those rare times where I feel the need to put thoughts down, but I am not emailing them in my usual fashion to family and friends. Yesterday I was reading an update about Lily, one of Jenelle's little friends from the internet and her Mom mentioned that as Lily's 3rd birthday was approaching in August, she was starting to get sad. I think we all do this, and of course, as I tried to get myself to sleep last night as the hour approached midnight, a though shot through my head and woke every bone in my body. It is not something I usually stew about in the middle of the night, but something that does come to mind from time to time... "How will this end?"
Sometimes I am so caught up in the care and time it takes for Jenelle, that I often can't look past the here and now. Then thoughts flood my mind like "Will she always be like this?", "Will she get better or worse?", "Will she ever need to be institutionalized?", "Will she die before me?" or "Will I die before her, and if so will she miss me or understand why I'm gone?"
We all enter parenthood for various reasons, but rarely to we ever truly realize the life long commitment parenting really is. Then of course, parents of special needs kids often get more than we bargained for. Another Special Needs Mom told me recently "Remember, it’s a marathon, not a race", and that was some of the best advice I really needed to hear. You have to take things one at a time, and slowly in order to keep the stamina to endure all that life with a special needs child has to offer.
There are times we get ice cream with Jack and my heart twinges a little because I feel bad that Jenelle cannot eat ice cream or popcorn, or things you buy on a whim when you are at the park. I feel badly for Jenelle, but realize that she really isn't aware of what is happening, so she really isn't missing out. Jack needs this attention more... and of course, there are times Jenelle gets more of my attention than Jack ever will.
When we work really hard at something, there is always some type of reward in the end. A vacation, time off, a bonus, a job well done, etc. Usually there is always a reason to continue with the hard work to reap the benefits. Being Jenelle's Mom, sometimes I really have to search high and low for the rewards. They are there, I know that. I am proud of all that Jenelle has accomplished since her first diagnosis, but sometimes I have to remind myself to actually see those accomplishments. Her progress is slow, but she has come so far.
So, as Jenelle's 3rd Birthday approaches (in 3 months) I'm sure I too will start to let myself be down once in a while. Knowing the things I'm missing because she is not a "normal" 3 year old child and yearning for her to improve. Yet, somehow once the birthday is past, I usually feel inspired for the coming year. I know that I will get through this time once again. Thoughts like last night are thankfully few and far between. Whatever happens I know that somehow we'll manage and survive. And life will go on.