On most days we have a very carefree, low-maintenance relationship. You require nothing of me, and quite often I reward you with just that. Most days I'm completely content with this arrangement, but tonight I can't sleep. Tonight I have a million thoughts going through my head, and the fears that I often hide behind a confident smile and a positive attitude, are starting to surface. So tonight you are more than my little corner of happy thoughts and pictures. Tonight you'll be my journal, my therapist, my place to vent and work through all the things I'm feeling at this moment.
Frustrated. Let's start there. Maddie is now 14 months old, and she is still not crawling. I don't usually talk about this stuff. I don't write about it, and I don't share it unless I'm asked. But lately I'm asked all the time. The older she gets the more questions I'm fielding. "Is she walking yet?" No. "Oh, so she's just crawling." No. And quite honestly, the questions don't bother me, so much as hearing myself answer them. It's like a daily reminder that things aren't working out quite like I'd hoped. I always knew walking would be delayed, and that my definition of walking might need revisions, but I'd always assumed she'd be crawling by now. Then there's the nursery dilemma. Do we put her with the infants because they aren't mobile, or the 1-yr. olds because they are her peers? This is an ongoing issue at church and the gym daycare...neither of which Maddie will tolerate for more than 15 minutes before I have to get her out. The only comfort I can take is in knowing that I actually am doing everything I can for her. I work with her everyday, on her tummy...and she's so close. But she's been so close for months now, and I'm just feeling frustrated. I feel like I need something to give me a second wind...some accomplishment to let me know that it's working. We had an OT evaluation last week. I was really hoping to find out if there was anything the OT could offer to help with our delay in crawling, as well as work out some feeding issues. It was super disappointing. Which brings me to my next feeling...
Angry. Why is it that some kids are able to have 5 different specialists, aquatic therapy, hippatherapy, and sensory integration...and I can't even get an OT to recommend sessions for us...at all. None. nada. So we continue with PT once a week, and I'm left feeling like we should be doing more...but helpless, because we can't. This OT is definitely spread too thin, and while I can appreciate the laws of supply and demand, when it comes to services my child may benefit from, I'm less understanding. This OT didn't buy into any of the sensory integration studies that I've been reading about. She wrote it off as hocus-pocus that hasn't really proven effective. I've got at least 4 Moms that beg to differ. Their crawling kinks were resolved shortly after this therapy, and they swear by it. So why wouldn't this OT give it a second thought? My guess is it's not her comfort zone...so where does that leave me? Well, angry I guess...at least tonight.
Scared. Of what? It's hard to say...The unknown is always scary, but for me, sometimes the known can be scary too. See I've been following a few kids that are pretty much SB rockstars, and I want so badly for their story to be our story. The problem is when I tell our PT about them, their SB level, and how they function...the look on her face is a mix of incredulity, amazement, and utter disbelief. It makes me feel that it doesn't leave much room for the possibility that our story may go so well. I want her to reaffirm my belief that this is possible. I think she's worried that I'm setting the bar too high. Lately I've been asking her some pretty tough questions about Maddie's capabilities thus far, and what it means for her future...I know there's no easy answers. I want her to say that it's completely possible that Maddie will walk unassisted, given what she's shown us so far...She tells me to take it one thing at a time, and we'll have to just wait and see what she can do. I know she's right...but I'm a control-freak by nature, and this "wait and see" goes against every single fiber of my being. I just want to know.
And let me just say, I know how sorry ths is all sounding...so Please forgive me. I know there are others much worse off than Maddie, and I am so very grateful for everything...I'm just having a moment of weakness, and I feel the need to get it off my chest. I'm sure I'll be back to rainbows and unicorns in no time...but for tonight, I can't sleep.