In my last post, I mentioned how I had been a bit “down in the dumps” and the following is something I wrote during that time; a time in which I was thinking things would never get better, that Elijah was perhaps having seizures, and life seemed ultra-gloomy. I thought about just erasing this post and banishing it to the trash can, but on second thought decided to share it with you all. Why I didn’t post it at the time, I’m not sure. Maybe I got too busy or perhaps I thought I was being too negative and felt the need to censure myself. It was probably a mixture of both.
But the fact is, I am human and simply cannot be optimistic all of the time. Besides, this is what I feel like sometimes. Most of the time, I am extremely happy and I feel so grateful that Elijah is doing so well. And other times, well...sometimes you can’t help but grieve over what you have lost and more importantly what Elijah has lost. It’s just not fair, but no one ever said it would be.
To be clear, I’m back to my old optimistic self again, so please don’t think this isn’t how I’m currently feeling. Anyway, this is what I wrote...
It really is true...you never think it’ll happen to you. When I looked to the future, I never pictured myself being a parent to a “special needs” child. It’s not exactly what you would hope for your child. Not that this undermines the love and acceptance we have for Elijah...to us, he really is perfect (sometimes I wonder if I love him more because of all he’s been through!). But, no parent wants to think that things are going to be more difficult for their child, that they’ll possibly be teased, that they’ll be undervalued by society.
I’m sick of the sympathetic looks I get. I can almost read the thought processes of people when I tell them of Elijah’s difficulties. “Oh, how sad,” they think. “Wow, I’m glad I’m not her, I’m glad it’s not my child.” Lest you think I’m judging these people, please realize that I would have been thinking the exact same thing had the roles been reversed. And, please, when you read this, don’t think I’m talking about you. I’ve found that those who read these journals have been nothing but kind and considerate. I’m speaking more of the random stranger, whom for one reason or another, I must explain Elijah’s story to.
I guess I’ve been feeling a bit down lately. I’m sure you’ve gathered as much from the preceding two paragraphs. Please accept my need to vent. Don’t tell me that everything is going to be okay. Don’t tell me how I’m supposed to feel, but rather listen. All I ask is that you try to understand what our little family is going through. I ask that you kiss your children and never take for granted those typical developmental steps that most children make without much effort. Don’t complain about how your child is into everything or that they never shut-up and realize that I’d love to have the same complaints.
I think about how positive I’ve been through all of this. How I’ve tried so hard to believe that everything will be okay. I’m an optimist and I really like that about myself, but I think I sometimes set myself up for disappointment. I’d give my life to make Elijah whole, but I know that’s not the option I have to choose. Rather, it’s my job to not sell him out, to not give up on him, to give him every possible opportunity to be the absolute best that he can be. It’s my job to believe he can be anything, even when others tell us it’s not possible.
Elijah’s progress is nothing short of amazing. He is sitting and doing very well, but he continues to be behind. Intuitively I know it doesn’t really matter. I know that he’ll get there eventually, but it’s hard not to ask the “what ifs”. Elijah isn’t putting things into his mouth on a consistent basis. He isn’t babbling. He isn’t creeping or crawling. He isn’t pulling to stand. He isn’t attempting to walk. He isn’t picking things up. Normally, I try desperately not to focus on the things he isn’t doing, but rather the things that he is. I suppose that would be possible if I could seclude myself into a cave and never see another baby or child...or another adult, for that matter. The abilities of other humans reminds me of what Elijah seems unable to do...at least right now.
It’s hard because Elijah should be able to feed himself at this point. He should be putting small foods into his mouth. Anything he has ever eaten, someone has put in his mouth. I only say this because it’s hard not to wonder if he’ll ever be able to do it. While I’ll do whatever he needs of me, I don’t want him to always be so dependent on his parents. How I long to hear Elijah say “mama” or “dada,” even if he has no idea what he is saying. I ache to have him wrap his arms around me and give me a hug or a kiss. He loves me, this I know, but it’d be nice if he were able to show it a bit more.
I only share these things because I hope desperately that you will all pray for him and for his development. I am a firm believer in the effectiveness of prayer. It would be sad if I didn’t believe after God has shown us time and again that He listens. I know that God cares about us and Elijah. God is looking out for us and that’s that only thing that gets us through all this. I know that one day Elijah will be healed completely. I hope and pray that his healing occurs in this lifetime, but I also realize that for some reason, I may have to wait longer. Either way, I know that God listens, feels my frustrations, and wants the best for all of us...whatever that may be. I just need to get on board with God and everything else will follow.
If you’d like to see a really cute video of a giggly, “squealy” Elijah...Click here