Friday, August 19, 2005

Are you really sorry?

I live in a house which is divided into four flats. Up until recently a couple lived in the flat above mine but I’ve only seen him lately, I haven’t seen her. So yesterday I commented to him when he was telling me something “I haven’t seen [his partner] lately, how is she?” and he told me that she has moved out.

Yeah, I really put my foot in it. I made some inane comment in response to that news, he wandered off and I went back inside my flat. But just what do you say to that?

My mum said that I should have said “Oh I’m sorry.”

To me, sorry is something you should say when it’s “sorry” for something you’ve done. If I knock someone with my wheelchair I’ll say sorry, if I’m rude to someone I’ll (probably) say sorry. I say sorry to my colleagues at citizens advice (where I work) for having to pass me things and do extra stuff for me because of my CP so much that I think it drives them crazy. But I think that you shouldn’t say sorry to soemone when what you’re apologising for is something which happened to them but has nothing to do with you is silly and annoying.

I once read a caringbridge page where the mother of a terminally ill baby wrote (I’m paraphrasing here) that her and her husband find knowing what to say when people ask “how are you” hard. She said though that they know that what “how are you” really means is they are saying what is expected of them after they’ve said hello. I think the same is true of the way “sorry” is used.

People will ask me “why are you in that wheelchair” and I’ll explain… they’ll be “sorry” People who treat my CP will ask if I have other medical conditions and I’ll say that I’m on medication for depression. They’ll be “sorry”.

But I don’t think they are really sorry, I think they say it because they don’t understand.

I have CP, I’ve always had CP and I always will. All it is, is a part of me. I’ve never known any different and it’s not something I’m sorry about. And I also have depression which at times sucks so much. The thing is though, depression too has shaped who I am and the experiences I’ve had which make me the girl I am. Yes I could probably have done without it but what I realise now is that if I hadn’t of developed depression a few years ago my life since then wouldn’t have been the same. I love the flat where I’m living, I have good carers and good friends, I’ve really got back into my writing and I adore my job. If I didn’t have depression or CP my life wouldn’t be what it is now. And I wouldn’t give my job up for anything.

So if we talk about my medical problems and you don’t know what to say, don’t be sorry. Admit that you don’t understand and ask sensible questions. Because you’re not really sorry, I know that. Anyway, I don’t need your pity, all I need is your friendship.

Saturday, August 13, 2005

Learning. Again.

There are times, as the mother of a special needs child, that you often walk around in a daze. You watch mothers holding, loving, enjoying their normal lives and their normal children. You watch children getting scolded for mischeif that you only dream your child could get into. You watch other children playing with eachother, and you realize that your child has 1 friend. You.

Its times like that, times of complete despair, that you start to question the meaning of this journey you find yourself on. It is moments like those mentioned above that you realize how much your life is so removed from all normalicy. It is moments like this that make you the person that you have to be for your child. You have no choice, no other option. This is your life.

Alot of times, we as parents focus on the hardships that our childrens disabilities bring to our lives. We focus on the day in, day out hurt and struggle. We forget that we are learning lessons that parents of "normal" children will never learn. That is a gift that we need to grab onto with both hands and treasure deeply.

We know what it is like to stare change (and some of us death) square in the face and take it by the horns. We know what it is like to treasure the doctors appointments that only require vaccines. We know what it is like to sit by our childs beds in the ICU and hold their tiny hands and pray for another day. Beg for it. We know what it is like to hold onto to hope tighter than its ever been held before.

So when you find yourself becoming jealous over what you dont have, look around at what you do have. You have an understanding of love that most parents will never understand. You have a been given the gift of sight. Sight into what life is like on the other side.

And it doesnt have to be full of dispair, its all in how you choose to face it.

The lessons that this journey will teach you are priceless. Face them with strength, determination, and hope.

-Heather




Wednesday, August 03, 2005

Shay's story

I'm sure most if not everyone here has read this story but I just LOVE it and recently was just thinking about it. I wish there were more stories like this and that all children could expereince glorious moments like this as well. So, here it is. ENJOY!

At a fundraising dinner for a schoolthat serves learning-disabled children,the father of one of the school's studentsdelivered a speech that would neverbe forgotten by all who attended.After extolling the schooland its dedicated staff,he offered a question."Everything God does is done with perfection.Yet, my son Shaycannot learn thingsas other children do.He cannot understand thingsas other children do.Where is God's planreflected in my son?" The audience was stilled by the query.The father continued."I believe,"the father answered,"that when God brings a childlike Shay into the world,an opportunity to realizethe Divine Planpresents itselfand it comes inthe way people treat that child."Then,he told the following story:Shay and his father had walkedpast a park where some boysShay knew were playing baseball.Shay asked,"Do you think they will let me play?"Shay's father knew that most boyswould not want him on their team.But the father understoodthat if his son were allowed to play it would give hima much-needed sense of belonging.

Shay's father approached one of the boys on the fieldand asked if Shay could play.The boy looked around for guidance from his teammates.Getting none,he took matters into his own handsand said,"We are losing by six runs,and the game is in the eighth inning.I guess he can be on our teamand we'll try toput him up to bat in the ninth inning."In the bottom of the eighth inning,Shay's team scored a few runsbut was still behind by three.At the top of the ninth inning,Shay put on a gloveand played in the outfield.

Although no hits came his way,he was obviously ecstaticjust to be on the field,grinning from ear to earas his father waved to him from the stands.In the bottom of the ninth inning,Shay's team scored again.Now, with two outsand the bases loaded,the potential winning run was on base.Shay was scheduled to bethe next at-bat.Would the team actually let Shay batat this junctureand give away theirchance to win the game?Surprisingly,Shay was given the bat.

Everyone knewthat a hit was all but impossible because Shay didn't even know how to hold the bat properly,much less connect with the ball.However, as Shay stepped up to the plate,the pitcher moved a few steps tolob the ball in softlyso Shay could at least be able to make contact.The first pitch came and Shay swung clumsily and missed.The pitcher again took a few steps forward to toss the ball softly toward Shay.As the pitch came in,Shay swung at the ball and hit a slow ground ball to the pitcher.The pitcher picked up the soft grounder and could easily have thrown the ball to the first baseman.Shay would have been out and that would have ended the game.Instead, the pitcher took the ball and threw it on a high arc to right field, far beyond reach of the first baseman.Everyone started yelling, "Shay,run to first,run to first."Never in his life had Shayever made it to first base.He scampered down the baseline,wide-eyed and startled.Everyone yelled, "run to second,run to second!"By the time Shay was rounding first base,the right fielder had the ball.

He could have thrown the ball to the second baseman for a tag.But the right fielder understood what the pitcher'sintentions had been, so he threw the ball highand far over the third baseman's head.Shay ran towards second baseas the runners ahead of him deliriously circledthe bases towards home.As Shay reached second base, the opposing shortstop ran to him,turned him in the direction of third base,and shouted, "run to third!"As Shay rounded third, the boys from both teams were screaming, "Shay! run home!"Shay ran home,stepped on home plateand was cheered as the hero for hitting a"grand slam"and winning the game for his team.

"That day,"said the father softly with tears now rolling down his face,"the boys from both teams helped bring a piece of the Divine Plan into this world."Shay, Was 'King' For a Day!

~Marisa

Monday, August 01, 2005

and wisdom to know the difference.

It must be said. I must say it. I must say it even though it hurts me tremendously to admit what is really going on here, what really happens.

See, it's Robbie. But it isn't. It isn't Robbie. It's the fact that often when I make plans for us and get us all ready to go and I tell him where we are going and what we will be doing...nothing. Just nothing. He doesn't show me at all that he hears me, that he understands me, that he wants to go or doesn't want to go. Now, I know full well he would have fun, say, at the fair, or the park or wherever. Or he won't and we'll do something else. I know whatever his reaction, we will be fine.

It's just the lack. Lack of reaction, understanding, helping me get him ready...the lack hurts me so much. It hurts so badly. And some days I just don't have the intestinal fortitude to care enough for the both of us.

And it is harder the older he gets. I need feedback. I need a sign. I just can't always do it.