Tuesday, September 23, 2008
Mom moment - straddling the fence
I'm still in mourning. Yes, for my father, I think about him daily - but that is not the mourning that I fight today.
I'm mourning what could have been. Most of you have something in your life that you wish could have been different, a choice that was made and later reflected on as a pivotal moment. Well our pivotal moment really wasn't a choice, because there was only one decision to make - DO THE DAMN SURGERY. Blondie had to have the surgery, or she probably would have died - we were only weeks from needing a ventilator and a feeding tube because her brain was under such attack. The reflection, for me, is in what could have been - her education, her friendships, her success as an adult.
I'm feeling like an imposter today, (my former students would shout POSER) because so many of you look at what Blondie can do and are inspired to keep fighting for your child, but today I'm just not feeling it. I made a bad decision yesterday - I looked at what was written by her teacher about the difficulties she faces in class. It was part of a behavior inventory for our neuropsych to see if Blondie needs meds for ADD (OMG Y-E-S). They are incredibly impersonal questions written in such a way that questions are phrased differently to get at the "truth" of the matter. I know she needs them. She is easily distracted even one-on-one, and remembering the directions (that change several times on a worksheet) is impossible unless you read one set, let her work, then read the next set, then let her work, etc. The teacher wrote the truth about Blondie's needs she is in no way at fault - we adore her- but it just hit that one tiny part of me that still denies that my kid may fall short in something at some point.
The sheer magnitude of what has happened to my little girl came crashing down on me for no apparent reason while sitting in a meeting with my principal about her learning strategies - it wasn't anything formal, just me asking for more ideas in what I could do at home with the whole learning to read thing - when you can't keep all of those blended letter sounds straight. Trying to get the teacher part of me to remain objective, and sit on the momma bear part of me that wants to protect her from one bad grade, or one mean comment. The rational part of me says IMPOSSIBLE - but the momma bear part of me GROWLS and thinks I'm going to die trying.
I have a unique perspective as a parent and a teacher. As a teacher I know all of the things I am capable of doing to try to make a difference in the life of a child. I know what skills are critical to learning easily, and she lacks some of them. I want her to love education, not have to struggle to do what others do. As a parent, I'm tired of fighting. I tell this to a lot of teachers who are concerned with how a special ed type meeting goes, I have to remind them that I'm one of "them." We're tired of proving what our children can do. We know our children needs some extra resources - we just want the school to be cheerful in giving them (Thankfully Blondie is part of a cheerful school). I remember how I used to worry only about her body's ability, now we're running into the processing issues that may be with her for awhile. Learning to read is a critical stage, and some days I feel like we're drowning. She is still in "regular" 1st grade without any resource, but will it last? I may need to face that - I just can't yet. I think I'm still in a bit of denial.
The picture at the top of the page shows Blondie the weekend before she started having seizures. I intended them to be Christmas presents, but they were never printed up... for anyone. They are a bit painful to look at, because they remind me of what could have been. Every now and then I'll pull one out and sneak a peak. I know the personality is exactly the same, the independence and the exhuberance, but those hands don't look the same, and that leg sure does give away some difficulties.
I continue to think about a little boy in another country that is similar to Blondie (CP). He limps(barely), his arm and hand work (more than Blondie's) but he has an even bigger obstacle.... No mommy and daddy. Please add him to your prayer list and pray that he finds someone willing to fight for him - as I find the strength to continue to fight for Blondie. I promise to post something more inspiring tomorrow.