One of the appointments this week was an evaluation at a place here in Indy called The Jackson Center for Conductive Education. Honestly, I've done quite a bit of reading on Conductive Education, but am still not quite sure of how it all works. What I do know is that it is an alternative therapy for children with Cerebral Palsy, which is by definition what Elena has. One of Elena's therapists recommended that we look into it, when I had mentioned that we were beginning to seek out other non-medically based therapies for Elena to try. The Jackson Center was pretty amazing and we feel very fortunate that we have one so close considering there are only 35 in the whole country.
From what I understand of the therapy, I'm certain Elena would do really well. Here's the dilemma, it's an extra six hours a week (not including the hour round-trip travel time) commitment. That's in addition to the already five hours a week she gets of traditional therapy.
It's a no brainer, we're going to do it. But what I'm struggling with is when is it too much? While most parents of two year olds are trying to balance trips to the zoo, the park and to the pool this summer, I'm going to be running around from therapy to therapy. As a parent of a special needs child, when do I get to just let her be a kid? There's this constant weight on me as I try to balance this delicate issue. On one hand, as her Mommy I will do ANYTHING to aid in her rehabilitation, anything to help my baby get better. But, how much of her childhood do I have to be willing to sacrifice?
It's heartbreaking. It's hard on me to accomplish it all. I can't imagine what it's like as a two year old. I never expected to have to make these decisions for her, and they're becoming much more frequent as we understand more about what she needs and what resources are available. I feel guilty whether I choose to put her through more therapy or whether I don't. As her little personality has begun to emerge, she definitely lets me know when she is up for something or not. I'm afraid she's going to think all Mommy does is put her through therapy. We are constantly trying to determine which is better for her, therapy of all kinds at all times or more time for typical toddler activities.
It's hard. Really hard. I just love this girl so much. I want everything for her. I want to give her every opportunity available. But I also don't want her to feel different than everyone else. I'm not sure when it's too much, when we're pushing her too hard. There's too much to even process. I'm just trying to put one foot in front of the other and praying we're making the right calls.
Even though we're a year and a half into this journey, I'm still learning and understanding every day. There's so much to balance, so many decisions to make for our Elena. I'm reminding myself daily that I'm doing the very best that I can. There is no manual on how to go through this, though I wish there was! And even though there always seems to be a slew of new issues just when one is resolved, I'm constantly reminded that I'm not in control. God is shaping this path for us. I remain certain that even in the midst of difficult times, there is a plan and we'll get by.
And through it all, this girl is pretty darn happy.
Have you considered talking to the therapists, and make one day a week a "free day" during the Summer? It could be a different day each week, rotating, so that a different therapy each week would be missed. I think the Jackson program sounds great....you can always try it out, and as with the therapists, skip one day a week for a "Mommie and Me Therapy" day! You continue to amaze me, Emmalee..... Take care, Mindy
ReplyDeleteYou are amazing! I have no doubt that you are doing just the right thing for your Elena. Follow your Mommy gut, it's always right:) I can't imagine having to make the difficult decisions that you make daily. I can't stress enough how inspirational you are.
ReplyDeleteThinking of you all (and hoping to see you soon!),
The Parkers:)