More than Words

  This last week I joined a support group for parents with children with special needs, which was highly recommended to me by Infant Development.

 One of the moms from the group had a story about being at the Children's Hospital with their 6 year old daughter, and noticing, in the waiting room, another mother and father with an infant, presumably with the same condition, newly diagnosed. She talked about realizing how far they'd come since they were in that position not that long ago.  The unknowns, the lost look, the devastation, it was all palpable. I know what she meant, I remember that day myself, burned into my memory, but more then that I could relate to her feeling; that she wanted to reach out and hug this mom, to let her know that she will get through it, and that it will be so much better then she thinks at this moment in time; to let her know that their challenges will be great, but the rewards far greater.  She mentioned that while she wanted to say all these things, she realized that what they were going through was all part of the process, and that the best thing she could do, was smile, and nod, and  that for those parents, knowing that someone else understands, seeing that their daughter was thriving...this was worth more then a thousand words.

  Back in August we were the parents with the recent diagnosis, facing all those unknowns;  and we met a little 5 year old girl and her family a few blocks away; she also has albinism. I didn't think her parents understood at the time just how much it meant to us to see their little girl thriving, and functioning normally, but most important; happily. Now I know, that they were the parents who had once been in our position, who remembered that day, and knew that what we needed most, could not be expressed in words.

 I know it was not even 7 months ago, but here I am thinking about how I wish I could go back and tell myself all about how great it is going to be, how much better it is then  what any of the Doctors told us to expect. I'm feeling this way already. Already we're miles from where we started...I cannot imagine how much further we'll be in 5-6 years...

 

Making Strides

  First of all, I can't believe its almost been a month since I last posted! How quickly time flies; when you're having fun I guess. 

  I've finally been able to introduce Sophia to all kinds of foods this last month; it honestly went from her eating apples and cereal (and pretty much nothing else) to her wanting to try anything I give her. Not sure what caused the change, but I will say that it is one of the things I'm discovering about my little girl; she will do everything on HER time, hmm I wonder where she got that from...? Anyway maybe it's good because it really makes me appreciate when she finally decides to do something, and when she does it...she does it well, and I suppose I can't complain about that. I just have to remember to keep trying, even when it seems hopeless.

  This last month has been encouraging in a number of ways; besides the strides in eating, she started swimming lessons; which much to my surprise, (I've been told on a number of occasions that visually impaired children usually hate water) she LOVES it! Also she's getting much better with other children too, I notice her interacting with other babies now; reaching for them, reaching for their toys even. She's clapping now, and babbling up a storm, asking for Daddy, even mimicking farm animals; well trying to anyway. All of these things I've been told are not things that she, as a visually impaired child should be accomplishing at 10 months...

  So how foolish I have been for listening to Doctors when they have told me what to expect from my daughter. The fact is, that I can, and should expect all the same things that any parent can.  Having an impairment doesn't define who you are, what you can do, or who you can be; the only problem with having an impairment is that all her life she will be told she can't do certain things.

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.

Is it all working?

So today, just like every other day I sat with my daughter and proceeded to work through the variety of exercises that have been recommended to me by Infant development, and Children's Hospital consultants. Currently our focus is crawling. Exercises are mostly focused on trying to get Sophia motivated to crawl, or at this point, simply motivated to want to stay on her tummy. Not that I had ever considered it before, but crawling is almost completely visually driven. By using toys that light up, or make noise, I attempt to encourage that drive to crawl. Today I'm feeling particularly discouraged and I don't know why. Sitting was another milestone that was delayed with Sophia as balancing was a particularly difficult task for someone who can't see well, but I'm happy to say that she worked through it, and although delayed, is now sitting just fine. I know that crawling is also JUST delayed, and that it is something that WILL happen, but lately I'm left wondering if all these exercises are doing anything.  I start to wonder if she is more frustrated, than encouraged. I feel selfish that I want her to crawl so bad, am I pushing her to do things because I want her too? I know that she will be behind other children, but I feel like I'm having a hard time coming to terms with that. I can't seem to shake the feeling lately that I'm failing at parenthood, and is this simply because I see how advanced other babies are and then I look at my baby and feel like I'm not doing enough for her? How selfish does that make me sound? Maybe all parents feel like they are failing, but maybe seeing their children reach those milestones on time, helps them  to realize that they are doing the best they can. I'd like to say that I don't still feel like what's going on with her is my fault, and yes I know how foolish that is. I know she will reach all the same milestones as other children, and I will look back at these months in 5 years and realize how needless my worrying actually is, but I feel guilty that she's not where she should be. I feel like I should be doing more for her. I wonder; are these exercises working? Am I  perhaps doing the wrong exercises? Could I be doing something better? Everyone tells me how important the first 3 years are developmentally for visually impaired children; I wonder if this is fuelling my anxiety. I feel so much pressure to work with her now, so much pressure to do everything possible to help her develop; be the best that she can be, during a time when it is so vital. When she's not reaching that next milestone, I feel like it's my fault somehow? 

Like I said today I'm just feeling discouraged, but maybe tomorrow that will disappear....

Hello

Okay so this is all very new to me, but I am attempting to blog, for a variety of reasons, primarily however to sort through the various emotions I have been going through of late. Let me explain, but first a little background on me.

 I am 24 years old, married, and mother to my beautiful little girl, Sophia Grace, born March 2011. I guess it all started when she was born and the first thing everyone commented on was her hair. I'm sure you're wondering what was so unusual about a baby with hair? Well it was white blond, and unlike anything anyone had ever seen before. Of course I think being a new Mom, in a state of euphoria, I couldn't fathom that it was anything but normal (and I use normal here in the sense of what is seen everyday) I just remember my Mom telling me that my hair was that blond as an infant. It wasn't. At 4 months old, at her regular checkup at the Doctor is when it all came to light. I knew in my heart of hearts that something was different with my little girl, seeing the way other children "greeted" their parents with a smile when they entered the room, I had never experienced that with Sophia. In fact, she had never looked at me. When i brought this concern up to my doctor I was sent immediately to an opthamologist for a check up. Later that day I would be informed that my daughter was blind. The cause of her blindness; albinism.
    At first I remember feeling guilty, it had to be my fault. I cried for a week, and I feel horrible admitting this because well, how terrible of a mother does it make me to feel completely devastated that my child was only albino, and blind, of all the things that could be wrong with her...   I think that we, or at least I have a tendency to plan my life, all the details and events, and I planned hers too. Foolish? Yes of course, but I think that all parents would have to admit that they've imagined their little ones first day of school, her wedding day etc. I will admit that at the time of her diagnoses that I had very little information on what it meant to be blind, and even more limited was my understanding of albinism. The devastation I felt was thinking of all the things that she wouldn't get to see, or do; driving was the main one that came to mind, but their were plenty of others. I remember feeling isolated; like none of my friends could understand, and even being around them at first was difficult.

  Well it's been 5 months since then, Sophia is now 9 months old, and I'm proud to say that she is thriving for a child who is visually impaired. Each day is going to be a challenge, I am told that the first 3 years will be the most difficult for all of us, as we are coming to understand what she is capable of. I have since learnt so much about raising a child with albinism, (of course I have much more to learn) but each day I learn a little more, and I'm excited to continue to learn as I watch my little angel grow.

So why am I attempting to blog? 1) For Sophia 2) to create awareness 3) to document my struggles and successes raising a child with Albinism. To be completely honest, some days are hard, I feel like I fail in some way everyday; maybe that's how most Moms feel, maybe not, but I'm hoping that writing out my feelings will help me . I know that life for my daughter will be difficult, and sometimes that thought kills me, but then I look down at this little angel of mine, and I know that we will get through it together.