ALL TO FAMILIAR

It's been awhile since I last blogged, I almost feel like I haven't had the time (all though I know that's not actually true) My life has been a whirl wind it feels like, with high highs and low lows. Some days I feel like I'm barely getting through....

In November we welcomed our baby boy Isaiah, and he has been such an amazing addition to our family, he really is an amazingly good baby, and it has been exciting for us to watch him grow and change. It is so strange, yet exciting to us now, to have a baby that sees so well....

 November was definitely a high point for us.

Fast forward to 2013, and here I am now feeling completely and utterly lost. Just when I started to feel as though we were getting a handle on the visual aspect with Sophia (in terms of, therapies, resources available, and support groups) we get an entirely new revelation....

Now I can't really say I was surprised, when Infant Development agreed with me that there was something more then just albinism going on with Sophia; something more then the visual impairment that seems to be holding her back. After reaching out to a variety of people in the albinism community, as well as attending a few conferences through the Canadian National Institute for the Blind, we reluctantly started to realize that it may no longer just be her vision affecting her development.

Last week (after jumping through what felt like way to many hoops) it was recommended to us that we officially pursue an assessment for autism. With that Sophia's name was officially added to the lengthy wait list at Sunny Hill/Children’s Hospital for public autism assessments. I will admit that all though I wasn't surprised by the Doctors recommendation, I was secretly hoping that he would disagree with our concerns, and tell us that her delays were all common for someone with Albinism....

We returned home, and began to sift through various informational websites, brochures, and private testing options, with no real idea of where to go next, and so many "to do's" now on our list…

 I never expected to be here again…  Isn't it enough for her to be visually impaired?? I keep asking, "why her; why does it have to be this too? Isn't her life going to be hard enough as it is?" I remember the devastation I felt upon the first diagnoses of her visual impairment, I remember not knowing where to go, what to do, or what to expect... this feels all too familiar...

I'm sitting here now, reminding myself that; we are stronger then we were last time that, just like last time, this is the lowest of the lows, and that it only gets better from here. It's not actually as bad as it feels like its going to be. I keep reminding myself that, one day we will look back at this, (just as we do with her visual impairment) and think, “if only we could go back and tell ourselves how  much better it ends up then what we thought.”

99 percent of me believes that it’s not the end of the world; but then there is that 1 percent of me that takes over and I start drowning in doubt. I don’t know what to expect as we pursue the diagnoses, but I have to let go of the fear.

 In the end two things in particular stand out; 1) she’s too young to remember going through all of this, and 2) she’s happy. We will just keep putting one foot in front of the other, one step at a time. If success is the sum of small efforts repeated day in and day out; then we will find success with her…that I know…and  in knowing that; I know  it’s all going to be okay.

Days Like This

 For the record, I am 99% of the time optimistic when it comes to parenting a child with special needs, and don't get me wrong I am well aware of the fact that it could be so much worse then it is, I just find some days, like today, that I can't help but feel frustrated and alone as a parent...

Today I took Sophia to her first music class for toddlers at the Langley Music school, which I was really looking forward to for her sake, though I will admit, I didn't really expect the first class to go splendidly; I wasn't expecting what I found either. She cried, and would not let me put her down, or let go of me, and pretty much was not interested in anything, even the singing or music; I felt like we took several steps back. Okay it shouldn't have come as too much of a surprise as she usually takes time to adapt to new situations, but she has been getting so much better in new situations; that I was a little shocked at how badly it went. 

  As usual I found myself assessing the situation; the lighting was WAY to bright, the other children were incredibly loud and unpredictable to her, I would imagine as she had her eyes closed most of the time, and the sounds would have been startling...no wonder she was upset! 

  Sitting in the class I know other parents are judging me when the teachers ask us to let the children explore things for themselves, but then there I am guiding Sophia's hands, bringing toys to her, and the teachers and parents, are glaring at me like, "just let her explore." For the most part I don't care, I don't expect anyone to understand, I don't need them too, all the questions, the relentless comments, I have, for the most part come to ignore. It's just some days it's hard not to let it affect me especially when it's one of those days with Sophia when it seems I just can't do anything right...

 

   I get that Sophia's vision changes from day to day, and that it can often depend on a variety of influences; lighting, glare, whether or not shes tired etc, and I can understand how frustrating that must be for her when her vision is suddenly less then the day before, and she cant understand why. It's just the unpredictability of it all that can really throw me, as I never know what to expect from day to day. Some days I have a perfectly well behaved, happy child, and other days I have a miserable child that just cannot be calmed. It is definitely a challenge some days to remain patient and optimistic. I feel like on those days, that I'm just not getting it, that I just cannot relate to my baby, or understand what she wants, and I'm not sure if other parents with visually impaired children go through theses mood swings as well, or is this just her personality?

   After class as I waited to ask about the lighting,  I couldn't help but feel like I'm the only parent with concerns, always assessing the situation, thinking about all these things that most parents would never consider. When I ask if the lights can be dimmed next time to accommodate her sensitivity to light, I'm not really shocked when the response is less then welcoming, and yet again I feel alone and frustrated.

   By the time I came home from the class I was already feeling pretty discouraged, and surprisingly exhausted (maybe that has to do with being almost 8 months pregnant) but now she's clearly upset or overwhelmed, she throws her lunch across the room, total meltdown, doesn't want to play, doesn't want to sleep, doesn't want me to hold her...and I'm just trying to not break down into tears. Days like this are not as frequent as they used to be, and I am very aware of the improvements she's made, but I just feel alone today. I know I'm not the only Mom in the world who has days like this, but today I just feel like I am.

Opening The Door...?

   So today Sophia received her first piece of mail in braille. It's funny because I realize that the likelihood of her ever actually needing to use this is pretty much non-existent as her vision is already good enough for her to read letters. None the less it peeked my curiosity as I looked over this jumbled "mess" of raised dots on a page and wondered how on earth anyone could ever make sense of such a thing? There had to have been a better way??

    Well if their is one thing I've learned it's that there is nothing that YouTube can't teach us, and in fact after only a 20 min instructional video, "reading grade one braille" I realized that all though I obviously still can't read braille, it's not as confusing as it seems. 

    Perhaps I have here again another lesson learned; here I was making a judgement on braille simply because I failed to take the time to understand it. I know that this is human nature of course, but I have come to realize over this last year that making a judgement on something without being informed is really the worst thing you can do. Here I was still jumping to uninformed conclusions; I really have to work on learning to approach these things with more of an open mind. 

   This is just the beginning of a world that Sophia has opened our eyes too, it is completely foreign to me, I can't help but feel lost sometimes. How can you teach your child to read something that you cannot? How am I supposed to teach her things that I have no idea about? I have to learn.

    I know she won't NEED to learn braille, but the fact of the matter is that she will likely be involved with many people who do, and how exciting is it that she will get to be involved in a world that most people will never get a chance to know? I'm learning to turn my fears of the futures' unknowns into excitement of new learning possibilities; how many children are fortunate enough to have all these organizations, and opportunities available to help them? Sophia may be on the lower spectrum of needing them, but that doesn't mean she shouldn't make the most of the opportunities presented to her. I hope we can get her more involved with the CNIB and that she can grow up with the realization that, while she sees worse then some children, she sees infinitely better then others. There is always a bright side, sometimes you just need to open the door to let it in.

Baby Makes 4...?

Well hello again! 

I know it's been awhile since I last blogged, but it hasn't been for lack of things for me to talk about, as these last few months have been particularly busy for my family. I have on a number of occasions wanted to share the news on the journey we've been going through but alas there are somethings that need to be keep quiet until they are ready to be shared.....

One of the most frequently asked questions since Sophia's diagnosis was whether or not we would consider having another baby, knowing the chances of having another child with albinism is 1 in 4. I have to say I am constantly shocked that this would actually cross people's minds, but it does, and trust me they not only ask, but most of the time offer an opinion on the topic. What I have found sadly is that most people believe that it would be foolish for my husband and I to ELECT to have another child, knowing how strong the chances are that they would also have albinism....

Everyone is entitled to their opinion of course, but I really wish that when forming such opinions that people would take the time to educate themselves... however most do not, and the truth is that I cannot, and should not waste my time rationalizing to everyone the decision to try for another baby to those that sadly will never understand. 

That being said; becoming a parent is (in my opinion) the most amazing/life changing thing I have ever/will ever do. When we decided to try for a baby, we made the decision to welcome the opportunity to be responsible for the life of another...we decided that we were ready to take on all the rewards AND challenges that parenthood bring about, but most importantly, we decided that we could LOVE a child. So I guess what I'm getting at is this; every child has or will have their challenges, some children have those more visible right from the start, but some have challenges that may take years to come about. Anyone who could possibly have a child and then regret that decision when challenges arise, should not be parents.

  Yes, I know Sophia will have challenges, yes, I know she has albinism, but to me deciding to not have another child because there is a 25% CHANCE that we could have another child with albinism, would be like saying to Sophia that we regret having her because she wasn't "genetically right." If it so happens that our second child has albinism then we will be better prepared to handle the challenges the second time around... 

  So what do I say to those that feel that we should not have another baby? I  say that I love Sophia more then anything, I would NOT change anything about her, and I honestly believe that she will be a better person BECAUSE she has albinism. Sophia has opened our eyes to a world we would not otherwise know and has made our lives infinitely better in every way. Why would we not want another???

AND ON THAT NOTE, I am very excited to announce that we ARE in fact expecting BABY #2 this fall!!

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.