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.

(Happy Baby)

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.


Jessie said...

Hi Kelly,

Thanks for your honesty in this post. I know that we will all have days like this for the rest of our lives. It is natural, and I don't expect it to ever go away...the wondering what could have been with our special child. If it helps any, please know that we are there with you in spirit and facing the same challenges and emotions.

I guess, in reality, we all fall short in some way. All kids have some disability or another. Our kids have a very noticeable limp and some cognitive issues.

If you read the Yahoo board, it often sounds like a bowl of cherries, when in reality, it is all of us trying desperately to see the good side of things...a denial if you will.

I tell you what I saw in Blondie. I saw a very cute, outgoing, and well behaved little girl up at Johns Hopkins. She wasn't shy like so many kids are today, and her limp was almost unnoticable. The best gait out of all the kids I've met to date.

I saw a happy and healthy little girl with wide eyes and curiosity and a little girl that very few people would even recognize any special needs in. She is a miracle and no one can tell me any different.

I see you as a Mom, so dedicated to her, that you would gladly take off your left arm and give it to her. I promise, because of you, she will be the BEST that she can be.

And Yes, Blonie is an inspiration, but so are you, to all of us who are new to Holland and to many who have been here for a long time.

Again, thanks for such an honest and heartfelt post. We all feel it, but most of us are too afraid to say anything.

Keep the Faith, Hope, and Love and you can't go wrong.


Recovering Noah said...

Hi Kelly, thanks for stopping by our blog. I haven't read any other left-hemi blogs, so it's been really neat to read through your blog and see how your daughter is progressing.

Our Nandi has porencephaly and is missing most of her temporal and parietal lobes (on the right side). She's doing great, but I'm afraid she's going to break a bone any day now because she has some spatial issues (trips and runs into things all the time). Schoolwise.. well she has street smarts and is really clever, but we'll see how the reading, writing, and math turn out in a few years. (She just turned 4 and has been in the U.S. for a little under a year now).

I do understand the mourning process - not so much yet with Nandini because we adopted her knowing that she had porencephaly - but with our Noah who was a healthy baby and who regressed into autism. He used to talk and play and say, "I love you, Mama" - and that's forever gone.

But we just have to pick ourselves up and deal with it don't we? And make sure we give our kids every opportunity to succeed.

Leslie :-)