Monday, December 19, 2011

The first time I really wished Joshua was 'normal'

Was this morning.  I am having a really hard time with the whole 'starting child care' thing.  I wanted to put Joshua into a child care centre for 1 day a week around the time that he turned two.  I went and looked at a couple of places nearby, and the first place told me they would have a place for him in January and I decided it would be ok if he started then.  Then we looked at another centre right next door, they also had a place for him in January, but have a minimum attendance policy of 2 days a week.  But overall we liked the second place a lot more and thought it would be worth putting him there, even if it meant it was for 2 days a week.  I do think it will be a good thing for him, he LOVES other kids, and loves having the day care kids at our house.  And when I go on Maternity Leave, he will be so bored at home just with me and then with me and the new baby every day, so I think it will be a good thing for him to be able to go and be with other kids a couple of days a week and get that stimulation.  Not to mention the developmental benefits of child care.  Even the timing of him starting in January as opposed to when he is 2, is probably a good thing, because the new baby is due just after he turns two, and it probably wouldn't be fair to start him in day care AND give him a new sibling all at the same time...  at least this way, he will be settled into day care before he gets another rude shock in his life.  After talking with my fellow HIE parents a few months ago, I felt really good about the decision to put him in day care.  Everyone told me how great it has been for their child etc, and I really felt it was the right thing to do.  Now that push comes to shove, I am so unsure.

You see, I think there are times in a Mother's life that it is normal for her to feel some apprehension about things to do with her child....  Starting Child Care is one of those things...  I don't think it is easy for ANY mother to leave her child with someone else....  but I feel like the situation that we are in (having a child with additional needs), takes these normal Mother worries and makes them worse.  Last Monday, and today, I took Joshua in to his day care to have a play while I could still be there with him, so he could get used to it while I was there.  And both times, I have come home and cried.  The first time we went, Joshua cried on and off the whole time we were there.  That was really upsetting for me, because I really thought that he was going to love going there.  So then I worried that I would leave him there and he'd be crying the whole time, and thought it must be a terrible idea for me to take him there, especially when he didn't HAVE to go.  So I decided I better take him in again before he started, to give him another chance to play while I was still there with him.  That was today.  He was a lot better this week, he didn't cry like he did last week.  So I should be happy right?  But I'm not.  For one, the girl kept calling him Joseph despite me correcting her.  Ok,  I know she will get to know him and won't call him Joseph anymore...   as far as I know she wasn't calling any of the other kids by the wrong name, so she will get her head around it...  though it makes me want to put a name tag on him to make sure he gets called the right name...
She also expressed some hesitation about what they would do with him when they go outside etc.  I supposed this is just to be expected, but it makes ME hesitant too... I said he was pretty fine just getting around doing whatever he wants, and that he will like doing things like going in the sand pit and that he can ride little bikes and stuff.  She asked if I would bring his walker for him to use outside.  I said that he doesn't have his walker yet, and it will probably be a while before he is good at using it, but when he was, I would bring it for him.  But now, I am just really worried that they will not make the same efforts that I do to include him.  For example, before we left, the kids had musical instruments out and they were singing songs, thats fine, I sat with Joshua and he was shaking the bells and then they started doing some action songs, like the Jingly Jangly scarecrow.  And I help Joshua do it...  I laid him down "when all the cows were sleeping" and then got him up when everybody jumped up and helped him to shake his arms and legs...   and I am thinking...  will they do that for him when I am not there?  Or will they just be like Oh well, he can't do it so he can just do whatever he wants off in the corner while everyone else does it...  They told me he was going to have a support worker, so I hope she will do things like that with him....   I am just so worried....  I know every Mother feels like nobody else can love their child like she does (and that is true I would say...) but what happens when your child is a little bit harder to love?  I wish that I could drop him off and know that if he wanted to do the jingly jangly scarecrow then he would just do it if he wanted too...  and not worry that he would be left out from all of those things because he can't do it and they don't think to physically involve him like I do.  I feel terribly bad, because I used to look after a child with Cerebral Palsy in the centre I worked at...when he was Joshua's age...  and I don't remember ever helping him do the jingly jangly scarecrow :(

And so this brings me to the realisation that Cerebral Palsy is no big deal to me...  I really don't care that Joshua has CP...  he is still the most awesome kid in the world to me and it just doesn't matter at all...  I never sit at home wishing he was different, because he is so brilliant just the way he is....
But all of a sudden, by starting child care, essentially this is the first step to what it is like to go out in the big bad world.  And have to deal with the way other people see children like mine.  I know its not going to go away....  if I don't put him in child care now, all these things are just going to happen when he starts school...   I can't avoid it..... And I can't make society different, or more accepting or more anything...   And I am realising that he isn't just going to be in some beautiful bubble with me all the time where we all 'clap hands for Joshua' for things that other kids were doing months and months ago....  he is going out in a world that just isn't as impressed with him and everything that he can do as I am...   He is going out in a world that is wired to see DISability, instead of ability like I am.  I just don't know how to make myself feel ok about that....  Instinctively, I just want to keep him at home with me and not worry about this whole child care thing...  but would that really be helping him?  I don't know....  But for the first time in Joshua's life, I really, really wish that neither of us had to worry about any of this, and that all I had to worry about was missing him and separation anxiety, and some other kid at child care biting him.

Another one of those Mummy milestones that all Mum's worry about, is having a second child.  Worrying how you will handle two children, feeling guilty for taking the attention away from your first born etc.  And its another thing that I feel like it worse because of our situation.  The first thing I mentioned...  worrying about handling more than one child seems almost laughable to me in a way, since I routinely have 4 other kids here along with Joshua...   So its not really the day to day of having two children that worries me...  I just think about all the other things i do with Joshua...  like therapy...  like appointments at the hospital...  getting x-rays done....   getting fitting for orthotics....   eye tests etc...   And think about how when we do things like that now, I am able to give Joshua my full attention... but soon, I will have to juggle another child through all of those things....  And it just doesn't sound that appealing....  I know I am not the first person in the world to have to do this...  many other HIE parents go on to have second children and they manage....  Many with children more affected than Joshua...  Many others already have children before their HIE child is born...  and they manage too...  just like we will...  even if means Rod will have to come to more of these appointments to help out when before I managed on my own...  it WILL all work out...  but its just one of those things that in your head feels like a huge deal...  like an injustice, because if you had a 'normal' child, you wouldn't have to worry about dragging a second child along to all of those things.....
It is a little harder to dismiss the guilt of taking attention away from him though....   How can you get your head around giving your older child less attention when they already need more attention that the average child?  I love it when I talk to parents of typical children.  "Oh your pregnant, how old is he, what will the age gap be?  Oh 2 years, thats not bad, my kids are only x amount of months apart"
Well, I am really happy for you that you had kids less than 2 years apart, I did forget to bring my medals with me, so I can't give you one, but actually, I am pretty sure that since your toddler was already walking and talking when your second child was born, it probably isn't the big deal that you are making this out to be.  You don't win the Mum Competition right now, because when my second child is born, my 2 year old probably won't be walking.  My 2 year old will have difficulties communicating.  My 2 year old probably won't be able to manage his meals independently.  When I go out somewhere with my two children and come home, I won't be able to get my 2 year old out of his car seat and have him walk into the house by himself while I carry the baby.  No..  I will have to carry both of them up 13 steps, and make two trips to do so, so I don't trip over and drop both of them down the stairs.  So, forgive me if I fail to see that your life was harder than mine because you had another baby when your walking talking toddler was younger than mine will be when my second baby is born.  (By the way, in real life, I just smile and nod when people spin me stories like this!)    
Please don't think that this baby was unwanted, because it is not.  We wanted a second child.  We WANT a second child.  But when you have a baby under the circumstances that we had Joshua, you do go through a period of grief for the experience that you THOUGHT you were going to have....  the labour and birth you thought you were going to have...  the healthy baby you thought you were going to have...  the entire life that you thought you were going to have is totally different to the one you imagined.  And what I am realising, is that these feelings don't just stop with that first child.  Because now you are expecting a second child, and THEIR life is not going to be what you imagined for a second child either, simply because they are the sibling of your first child.  In a lot of ways, that second child's life is going to be richer than you ever imagined.  Like me, Joshua's little brother or sister will be a better person for knowing him, but it won't always be easy for them and it won't always be easy for me either.

A baby is a blessing, and I am blessed to be pregnant again, and blessed to have gotten pregnant so easily when it is a struggle for so many others.   I don't want to sound ungrateful for having something that other's desperately want and don't have, but you will have to forgive me if at times I don't sound appreciative, that I don't seem to be jumping for joy about being pregnant again.  Unfortunately, once you have started walking this path, pregnancy is not the same as it used to be.