Monthly Archives: December 2006

Singing again

I finally got to go back to choir practice tonight after my three month absence. It was a wonderful thing! I even got to stay for the whole rehearsal since Lauren is no longer nursing.

Now – to make it to church on Sunday……we are expecting another foot of snow tomorrow and Friday.

Merry Christmas!!!

To all who celebrate Christmas – wishing you a very merry one! I hope you all have been able to spend the day with the ones you love.

As you can see in the picture – I got everything I wanted for Christmas this year.

Christmas tasks

I spent the evening wrapping Santa presents in the basement. Afterwards I went upstairs and spent time drawing up medicines in syringes to adminster to Nathan.

For some reason – doing those tasks back to back really got to me.

It just isn’t natural.

p.s. Believe me – I am grateful that Nathan is at home. I am happy to be filling those syringes at home instead of at The Ronald or not filling them at all at the hospital

Killing time

I have nothing of interest to say because I am just sitting here waiting for Tuesday to get here. On Tuesday I get to get on a plane and go get my guys from NYC.

Meanwhile I have been doing mundane things like cleaning, surfing the net, listening to Christmas music, oh and taking care of the girls.

I have been selling a few baby items on Craigslist. Someone came over to buy a car seat base today. Julia and I were making cookies. The house was clean – the Christmas lights were on – Christmas music was playing the background and I was holding Lauren. I thought to myself that it must look like I am living some sort of ideal life. Me and my “two” children, nice house at Christmastime. Meanwhile – I am living a life no one would want to trade for. Well I guess I have to take that back – I know plenty of angel moms who would trade me….one more day with their child alive…

Still – it always reminds me not to assume things about people. Occasionally I will see a family I do not know – with a boy about Nathan’s age and I think to myself “they have no idea how lucky they are” and then I realize that I have no idea what their life is like. Perhaps they have already lost a child.

Can’t judge a book by its cover, I guess.

p.s. I actually DO judge a book by its cover…so that saying doesn’t work for me. I totally glance at the cover first and make assumptions about the book…isn’t that what the cover is for?

My Girls

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I believe that if you are a parent your strongest instict is that to protect your child. What parent would not trade their own life for the life of their child?

That is why I just can’t seem to figure out how a parent stops fighting for their child’s life. If there is the slightest hope that your can save your child’s life, how can you not at least try?

What about prolonging your child’s life? Here is where the waters get muddy. Your child is terminally ill. To what lengths do you go to prolong your child’s life? After all, does not each day bring a new day where a new teatment may be discovered? Isn’t each day precious?

Several months ago I watched the documentary, “A Lion in the House”. It followed families of children with childhood cancer. On more than one occasion in this documentary, the lengths to which parents went to prolong their child’s life were questioned. They were questioned by doctors, nurses and even other family members. They were criticized for causing more pain and difficulty for thier children in their final days. One father took his daughter in to get chemotherapy on her final day against her mother’s wishes. Another father fought the doctors who wanted him to sign a DNR on his son.

These other people clearly wanted to save the child from pain and suffering. These parents wanted to save thier child’s life. I don’t blame them. How can a parent let go? It is a lose/lose situation. There is no feeling good about any of it. When the child dies the parent wonders if they should have done more or they wonder if they should not have put the child through so much.

I don’t know how I am going make the decisions I am soon to be faced with. We have already gone down a road we swore we wouldn’t. In a last big effort to save Nathan’s life we have ended up with a 6 week hospitalization and three months away from home. The doctors had no idea that this would happen and if we had known it would we would not have chosen to try this treatment.

Parents just shouldn’t have to make such choices in life. It sucks the soul out of you.


I am sick. I am sick in all ways that a person can be sick. Physically, I have some kind of virus that Lauren gave me that involves a fever and a cold. Mentally, I am in a very bad place. Here I am over a thousand miles from where my son lays in a hospital bed. My stomach feels sick. I am sick with fear. I fear that he will not come home in 10 days as planned. I fear he will get an infection with no immune system to fight it. My heart is sick during this holiday season with the likelihood that this will be Nathan’s last Christmas.

I am sick – and there is no cure.

Checking in

I have been neglecting the blog and I actually have too many things running through my mind that I want to put here. It is currently well past my bedtime and so I am afraid tonight will not be a good time to sort through them.

The girls and I arrived home yesterday after spending almost 3 months in NYC. It was like some kind of out of body experience for me today to be doing the suburban preschool drop-off thing in my minivan after months of walking the streets of NYC and spending every day in a medical facility. It has my head spinning.

More blogging to come soon….I hope.