Thursday, September 19, 2013
So, I've hit another bump in the road of our hearing loss journey. Sometimes I daydream about what it would be like to coast the rest of the way. No more speed bumps, no more pedal to the metal, or abrupt stops, but to just cruise along. Maybe someday, but for now it seems like just about the time I feel like I am comfortable with this way of life I reach another part of the process that I didn't anticipate. The last time I felt this way was around SJ's birthday and I described it a little something like this
Every month, every holiday, every little outfit that she's outgrown seems to trigger memories of the valleys that we walked through last year. I still feel like I am walking around in shoes that don't fit sometimes, but I guess all mothers feel that way and we just need to grow into them.
Well, now there are some new milestones approaching and I wince and turn my head with idea that maybe I can dodge this part of processing everything. As funny as it may sound Z's birthday triggered some emotions for me. I have blogged about their birthdays being EXACTLY 2 1/2 years apart. That means that the day Z turned 6, SJ turned 3 1/2. At this age the school district has you fill out paperwork about where your child is developmentally and then they give you test results for this 42 Month assessment. SJ is SO far behind right now. Even though it doesn't mean anything and it's just standard protocol it's sad to hear that when I know how intelligent she is, but she is trapped in a world where she has very little language. So of course she doesn't know any colors, numbers, very few animal noises or people names. We are doing absolutely everything in our power to unlock communication for her, but there is no instant download. The older she gets the more serious it is. Four is a very significant age. At four "babies" become kids. I think about what Z was like at age three and he was just a little toddler to me, but at four he was not that much different then what he is now two years later. Plenty of subtle changes, but his personality and abilities have been quite consistent. Many kids start school and children's church at this age. I know SJ won't be ready for children's church yet, which is no big deal. I also know she won't be starting a mainstream school for many years, and I am okay with that too. She will catch up, but it's hard to be patient. She wasn't too drastically different from her peers when she was diagnosed at age 2,
and she hopefully won't be that far behind when she is talking up a storm in the next year or so, but right now is the pinnacle of the cognitive gap.
And that is hard for me. We have to work twice as hard and twice as fast just to get to what would be normal. You might be thinking "So what? What is normal anyway, it's all relative". Well, of course I love her no matter what and she is doing great, but note the title "Unfiltered Thoughts". I am just being candid about some anxiety that creeps in from time to time.
I was told that it was going to be challenging. I was warned not to get my hopes and that the cochlear implant process will take time, and I listened, but in the back of my mind I was secretly believing it would be different for SJ. I thought maybe she would shatter the records and be some kind of cochlear prodigy. I was hoping she would be talking by now. I have her hearing birthday looming in the back of mind (it's 2 months away) and I am not ready for that milestone. The day of her activation was not the most positive experience so thinking about it is a little unpleasant.
For the record overall I am feeling blessed and energized, but these other feelings are real too and I am not the bottle it up kind. There is a support group at the school and I wasn't able to attend last year because we lived so far away, so it will be good to go to that and I've got groups that I am apart of online, plus my church family and real family. Her school is the most amazing school anyone could dream up, and there are a lot of really wonderful things happening right now so I don't want to paint a bleak picture. I am proud of her where she is and for who she is. She is one of the best things that ever happened to me. I am just ready for the uphill battle to be over, and I have a feeling we are just about to the top. At least for this hill.