The formal definition of special needs is “the individual requirements of a person with a disadvantaged background or a mental, emotional, or physical disability or a high risk of developing one”. I consider myself to be a parent of a special needs child, specifically because Wendy has a chromosome disorder, which resulted in her having a colostomy, feeding tube, and many other malfunctions in her organs. However, the doctors have Wendy listed as having a permanent disability. The way I look at it, is that her disabilities are temporary. Her colostomy should be gone within six months. We eventually hope to completely have her feeding tube gone. And we have no way of knowing if she will be developmentally challenged or not. So, if she has her two surgeries and gets rid of her colostomy and no longer needs a feeding tube and is not mentally handicapped, is she still considered special needs? Will she always be labeled special needs because her organs are mixed up and she has a chromosome abnormality? I’m not sure.
Every doctor we have seen seems to think she will have developmental delays. How severe? They’re not sure. But because of her having a chromosome anomaly, they seem to automatically think she’s going to be intellectually disabled. I don’t think that’s a fair assumption. I’ve never raised a “normal” child, but seeing other babies, my Wendy doesn’t seem to be far behind them, in mental or physical milestones, other than her being almost nine months old and only a little bigger than the average newborn. I’m not saying the doctors’ opinions are wrong, I just don’t think we should assume anything about Wendy because she has proved to be quite extraordinary so far. When I was pregnant and they saw her unbalanced translocation they told me they didn’t even know if she would live, simply because they have nothing to go by. Well, that’s kind of how I feel about them saying she’s going to be disabled all of her life.
It just makes me wonder if I will have the title “special needs parent” all my life (not that that’s a bad thing, because parents of special needs children are usually some of the most exceptional parents out there). I won’t ever be able to say my daughter is 100% healthy because internally everything is not as it should be, but from watching Wendy I don’t know that I will always have to say my daughter is disabled. At this point we are not sure about anything. The only thing I am absolutely positive about is that Wendy is the most perfect little miracle I could’ve ever wished for. And whether I only get to take care of her until she’s 18 or if I have to take care of her until she’s 80, I will love her just the same as I always have.