We All Have Our Challenges

So on Friday we attended our first Infant development playgroup, as my consultant has been recommending that we go. I think I had been putting it off thinking that compared to the other parents likely to be in attendance; the challenges we've been having with Sophia would seem, well insignificant. I guess if I were to be honest I felt like they would look at us and think, "what are you doing here?" I really wish I had got over myself and  had just gone earlier, as it was, dare I say rather refreshing to be around other parents who were/are struggling with their child's development. Most of the children were premature, I think a few had autism perhaps, and I believe one was deaf. It was refreshing to not have to explain, why my 10 month old isn't crawling; so refreshing to find myself around parents who are also facing the same challenges, but more then that, parents who, without having to say anything...understand. As we were talking with the one mother about her premature son, she pointed out several challenges she has faced, and I can honestly say that all of which I never would have considered. I would imagine that she felt the same way about my challenges.  The truth is we all have our challenges; and perhaps to us those challenges seem so much more severe then they actually are; we are parents after all, and all we want is to brag about how well are children are doing. I don't know why I care so much what people think, I've been struggling with the negativity I've been receiving when I'm out with Sophia and she's wearing her glasses, but why? Why do I let these ignorant people get to me? Her glasses help her see better; I know this, I've seen this, I shouldn't care what people say about her wearing them. I guess I wondered while talking to this mother as she was talking about how much she hated that her sons feet were still so puffy (a premature thing apparently) that he couldn't wear normal size shoes; is this how I sound when it comes to Sophia's glasses? I wear glasses, my husband wears glasses, Sophia wears glasses; it is what it is.  I think perhaps one of the best realizations I've come to through all of this; is not to judge people so much. Maybe that child acting out in the mall actually has autism, maybe that little boy you can't understand is actually deaf, or maybe that little girl wearing glasses, is actually blind. 

Day Care??

Today at our regular visit from our Infant Development Consultant, we met with a consultant from Supported Child Care, to talk about Sophia's needs in day care; mainly to see if she qualifies for a care aid. Finding day care is hard enough with out having to search for one that also suits the needs of a child who is blind, and sensitive to sunlight. We were fortunate enough to find a daycare, well rather it is considered a Junior Kindergarten, that is absolutely fantastic; it however does not make going back to work any easier. Today I had to talk about, and write down all my concerns and fears when it comes to having my blind daughter in day care... let me just say that actually taking about it was more difficult than I imagined. My greatest fear is that she will be left out, not seeing whats going on, is going to be difficult for her. I probably spoil her, by talking to her all day, and describing the world around her; this is less likely to occur in a situation where she is sharing attention with 4 other children per adult. Fortunately she qualifies for a (most likely) full time care aid to help her complete her daily tasks; things that would be simple for other babies; eating, mobility etc. Still as I sit and talk about all the things I do with her to help her development and understanding of the world; light positioning, keeping things extremely organized and in their place, helping her know what to expect by giving her cues, (the list goes on, and on) I begin to think that there is probably a reason why Sophia is the youngest child Supported Child Care has ever worked with; most moms in my situation have stayed home.  I know in some ways day care will be good for her, and she needs to learn how to be her own advocate, and she will, but is she too young still? I know she will, unlike most children, be lucky enough to have a team of people, consultants, and care aids, all supporting her; and the day care is, like I said the most fantastic place; so why am I still so worried its not enough?

What Does She See??

I'm constantly amazed at the amount of people who apologize when they hear that my daughter is blind, "I'm so sorry." People seem to have this impression that being blind is a terrible thing, and maybe that's because they are not sure what it means to be blind. I will admit again that when I first found out I was devastated, and there still are times when I feel a moment of sadness for the things that she may not get to experience as a result of her being blind, but the important thing to remember is that to her this is normal. I have to remember that she will not miss anything, as this will always be her normal. As my Grandmother (who is blind) said when asked about what she sees; "how can I tell you what I see, when what I see is what I've always seen?" Sophia CAN see, that is a fact; she see's light, and objects, but from my understanding it is like looking through a sheet of wax paper when she looks at the world. Normal vision is 20/20, legally blind is 20/200, Sophia's vision is probably hovering around the 20/600 mark at this point, and while that is already better the she was originally diagnosed (20/1000) it probably will never be better then 20/200, or legally blind. That being said, there is no reason to feel sorry for her, she can and will have a very normal life even if her vision never improves. I'm realizing that for the rest of my life I'm going to be educating people, about albinism and blindness; this is only the beginning of it, and I know that how I deal with inquires will directly relate to how she deals with them in the future.The reality is that there will always be people who don't understand, people who feel the need to apologize, and I know that I need to do my best to not be upset by their apologies, and take it as an opportunity to make them more aware. That is easier said then done.