Thursday, 8 April 2010

Its Time....again

I haven't posted much lately. I have felt kind of weird for a couple of weeks.
When we got back from home ed camp I came down from the wonderful high.

Part of that reason was getting a letter from our son's surgery team. They have room/time for him to go in for another surgery in less than a month.
Just saying that out loud makes me sick to my stomach.

The last time he went in I was pregnant with our 2nd youngest. Our son was 17 months old.
Hub, myself and my belly babe, and our son went in to the hospital, early. Our other 3 children stayed with my parents.

To say it is difficult having your baby/child go through operations is an understatement. Emotions run wild, sometimes hard to control. You can go from positive, thinking yes, he'll be fine, to oh my god what if something happens, and crying your eyes out.

I want him to be able to do all the things other kids do. I want him to be able to run around, play sports and not over heat. I want him to not worry if his birthmark will get knocked and tear, as it is very thin skin. To go out in the sunshine and not have extra worry about melanoma.

I'd be lying if aesthetics did not play a small part.. There is a fine line between 'like most others' and different. This is another topic close to my heart when thinking about, talking about our son. I struggle with him looking how he did as a baby, how he looks now, and how he will look after these upcoming surgeries. At every stage he is my beautiful son. The struggling is because the change is so different, and it was our decision for him to be put through it.
But I just have to look at those big blue eyes. The are the same bright, sparkling eyes. When he smiles they light up, with a dash of cheekiness illuminating.

I do mean it when I say my children are beautiful to me no matter how they physically appear. My son is so beautiful on the inside that it radiates outwards.

But. There is the but. He DOES look different. His Nevus is still large on his head. It is very noticeable. Part of me wants it to be gone, so he doesn't have to be stared at, pointed at, asked questions. So he can go about his day inconspicuous.
To lead a life like others.

And then the dial turns and I see that really, we are all different. Some of us just more noticeable then others. Instead of asking why my son, I ask why not?
Why not him to have something that not many others do? Why not him to show others that beauty is not skin deep?
As I said earlier he is beautiful on the inside. He is energetic, very cheeky, so lovable and he likes to make my heart stop when climbing or jumping from anything and everything.

I truly do feel blessed that he joined our family. With us it is busy, crazy and sometimes chaotic. We keep on moving, together. Jump on and hang on.
He is growing up with no special treatment from his family. We go anywhere and everywhere, and do activities like everyone else. Keeping on with life has always been a focus for us, more so since he was born. We want him to know there is nothing he can't do. He has every chance like everyone. If he wants something he will make it happen.

And now with this letter arriving, familiar feelings and emotions have come rushing back. He is now 2 years older, more aware, bigger, stronger and much more vocal. He can tell us with words when he is hurting, upset, tired or wanting to just be with us.

I truly do not know how he will be this time, how he will cope. Same for hub and I.
For now I am thinking more about how he will look back on this as an adult. I know, I should focus on right now. But it's hard not to wonder if he will be understanding or angry, upset with us, his parents, about what we have put him through as a child.

We have talked about this at length, and agree we will be honest and tell him what we talked about, together, with the surgeons, with other Nevus families, and with our hearts.

We do what we feel is that we do what is best at the time, with the knowledge and support we have at that time. I hope he will see that, and know how much we have loved him, even from before he was born.

I know I have been 'hiding' in regards to pics of myself. So I will share a pic of myself and my beautiful boy on his first Christmas. The other children had fallen asleep, so Hub and I took some pics of our bubbly, happy bubba.

I will write again more as we get closer. His surgery is booked for the day after his 4th birthday.


Nat said...

Oh babe, what a beautiful, raw post. Thank you for sharing your feelings so honestly. You might be blessed to have him as your son but he is just as blessed to have you for a mama. That photo of the two of you is just gorgeous. Thinking of you as you process and experience these difficult emotions and decisions. Big hugs. xxo

Anonymous said...

This post is such a beautiful one ~ your son is also beautiful just as he is, but I realise the "why's" of him going through this operation.

I agree with Nat ~ the photo of the two of you is absolutely beautiful and so full of love.

When I look at your son, I see the sparkling eyes and the cheeky grin.

There is no such thing as normal, for I doubt anyone would fall into that category.

Have a wonderful and blessed week,
Love, Jillian ♥

Anonymous said...

I really enjoy reading your posts about your son's nevus and the journey it is taking you along.

I remember when I first got to know you and found out that he had surgery to start removing the nevus, I was so intrigued to why and wondered if it was for aesthetic reasons (though you so didn't seem the type LOL).
And then you told me more about it, and I read more about nevi, and it all makes perfect sense to me why you chose to have the surgery done. I think he will understand when he is older too :)

Shitty timing for it to be the day after his birthday though! Better the day after than the day before though I guess...

Much love to you and yours xox

alecat said...

Hey there! Your photo ... that's about the time we met, isn't it? It's amazing to think he's grown so quickly and is almost 4 yrs old!

Well, we're thinking of you, as always, and hope everything goes super well. Thank you for sharing such personal feelings, but I hope you know that there are plenty of us out here offering support and friendship.

Lotsaluv always,
alecat ♥ ♥ ♥

What I wanted to say was... said...

I have written about 10 comments and then deleted them, it's just not coming out right.
It was for us the best decision we could have made for Hamish. A slightly different surgical approach back then, which has left him with significant scaring from his grafts but still one he has said he's glad we did. We recently switched all of our old home movies to disc and we had all of his surgeries & trips to hospital on tape. It was really interesting to see that at two, before we started the process, lots of his personality traits are exactly the same as they are now as a 16 year old. The decision to remove his nevus didn't change him one bit, just made his life a little easier.
Love to you all as you go through this. Will be eagerly checking for updates and keeping you in my thoughts.
Love Jo

What I wanted to say was... said...


What is the type that would want it removed for aesthetic reasons?
We made the decision to remove our son's facial nevus based on aesthetic reasons. His nevus covered half of his face, was hairy, and had lumps prone to bleeding.
As a parent of a newborn I was physically grabbed one day by a man asking what I had done to my child. Hamish, even after surgery is asked almost daily what happened to his face.
I could give a million medical reasons why we decided to have it removed but the truth is, as parents we wanted to make our sons life, which was always going to be harder than most, a little easier. And I believe we have.
This post has brought up lots of emotions in me. I wish I was so eloquently able to write down our journey.
Love Jo

Anonymous said...

Hi Jo
Sorry if I caused offense with my 'type' remark, it was merely a jokey comment to a friend by which I meant that I knew that the reasoning behind having the surgery done was to make her son's life easier, not her own, just as you have done with your son :)

Hands and Hearts said...

Thank you everyone :)

Just thinking about it Alecat, yes that would have been close to when we first met. Seems so long ago now.

Thank you for your reply Jo. It is a hard decision isn't it. I don;t think any of us who have made it have been without doubts sometimes.
We just have to do the research, and a LOT of soul searching to do what feels right for our children hey.

In regards to apwool's comment, I understood what she meant. Sometimes the written word does not come out right. Apwool and her family are very dear to us and we adore them as they do us.

I believe what she meant was that I am not someone who cares about looks. But I know she understands after talking a lot to me about removing part of his nevus that it will hopefully make his life a bit easier as he grows aesthetically.

I am so sorry to here of what happened when Hamish was a baby. I muself was terrified every time we went out when our son was young, for others would stare so much and I hoped they wouldn't talk to me.
I found adults much harsher and rude than children, and still do.

I do like reading your blog about Hamish as a young man now, and thinking about our son as he is older.
Thank you again for responding.

tiff(threeringcircus) said...

I loved this post and I love the photo of you with your gorgeous boy.