I just couldn’t leave my last post at the top for too long as it is just too awful.
So – for some lighter fare…
The other day Nathan and Julia were getting set to play Uno with Luke. Lauren was way too interested and I could see trouble brewing and so I asked her to go for a walk. She is 19 months old – by the way.
I figured we walk to the end of the cul-de-sac and on the sidewalk for a few minutes but she wanted to keep going! (she is walking – not is a stroller) We walked to the next cul-de-sac and started up the big hill behind us, which has wild, native grasses and plants.
I pointed out ants, which she adores, and she had a great time watching them, in that classic toddler pose – legs bent, bottom almost touching the ground and head bent forward. She thinks all bugs are bees and so she kept excitedly saying “bees!” and giggling as they raced around her feet.
She decided she was done and we walked home, braving some sprinklers on the way. She was the best company! I can’t believe she has turned from a baby into a little person. It was a wonderful escape from all the awfulness. I will be sure to do it again soon.
p.s. Nathan had a wonderful day today – it made up for the very crappy couple of days we have had lately.
p.s.s. Thanks for all the comments and support.
We have had to make a whole lot of terrible decisions during Nathan’s battle. Decisions that no parent should have to make about the life of their child.
It seems they just get harder and harder.
Nathan is currently dependent on platelet transfusions. He needs a transfusion every 5 days.
So – today the doctor (not his regular doctor) asked me if we wanted to transfuse. The alternative is for Nathan to hemorrage to death. Nathan was sitting there in the room so we had to speak obliquely about things but I basically said that it would depend on what else Nathan was likely to die from. However, we couldn’t really have that conversation and I just said that I thought we wouldn’t want him to bleed to death.
So – I guess it is coming to the time when we need to decide how Nathan will die. Bleed to death? Infection? (forgo a preventative antibiotic he has been getting) I think the usual thing to happen is a tumor takes over the abdomen or liver and and shuts down the vital organs. We don’t even know if he has any such tumors. We do know he can’t go on hospice and get the services they provide while he is still getting transfusions but I am thinking if we stop transfusing we won’t have much time to need their services anyway. I have no idea if bleeding to death is a bad way to die. Doesn’t sound good to me.
Anyway – it is all just awful. It is worse right now because we have very little information from the doctors and we hope to remedy that soon.
Sorry for the lack of blogging. I have been updating Nathan’s page almost daily so that takes my energy away from here.
If you ran into me on the street and chatted with me you’d think everything was fine. I make a big effort to be that way. I don’t want people feeling sorry for me – most especially myself!
However, considering I have a child who is dying and everything he and I and us have been through there is a price to pay for that “everything is fine” demeanor.
First and foremost – is my marriage. Don’t be alarmed – my marriage is fine. However Luke and I deal very differently with stress. I wall myself off in all ways and he could use my support and closeness. Therefore, I cannot give him what he needs. This is something he and I discussed the night of Nathan’s diagnosis many years ago and so it is something that we (he) just deal(s) with. Right now, it is particularly noticeable to me.
Second – is my mental health. I have night terrors and they have been ramping up as of late. They are particularly bad lately with people/Luke/Playmobile toys (don’t ask) trying to kill me. They end up with me balled up on the floor shaking and crying.
Third – is my friendships. This is kind of related to #1 as I find I can easily socialize with casual friends, but those closest to me I find harder to spend time with. They KNOW me and aren’t fooled by my facade. But, I NEED that facade to function and I don’t really want to step away from it, so I think I am avoiding some of my friends (you know who you are!).
There are more ways in which I am failing but I think that is enough for now. I am doing the best I can – but my best is never good enough for everyone. I know everyone understands (well except for my kids) so I am not worried. If this were to go on for too long I suppose it could become a problem.
Oh well – what am I to do?
Seven years ago I gave birth to my first child, Nathan. I became a mother. I was instantly in love.
Seven years later I am “celebrating” Nathan’s last birthday.
When you give birth to a child you never imagine your time with them could be so limited.
I think of holding Nathan in my arms and imagining his future. It is just so wrong that he isn’t going to have one. That I don’t get to witness the man he would have become.
I no longer really imagine the futures of Julia and Lauren. I find that to do so seems such a luxury and I just can’t afford it. Instead of expecting them to grow up – I really hope it will happen. I do not take it for granted. It is a loss of something most have as parents. You expect your children to grow up. I will never expect that again.
The joy I have in my other children can never be as carefree as it could have been because it is tempered by knowing I could lose them too.
It should probably be a happy day but it is not. I am sure next year it will be an even worse day – so I am trying to make myself be happy that today he is here with us. It is hard.
I have to go bake his birthday cake now….
I have been quiet – not sure what to say.
So – even though 99% of you read his blog too – I want to refer you to Luke’s post on cancerdad.
I actually got to kind of explain this to a person I met for the first time today at a playgroup. I had to explain why my son wasn’t there and why I was. It went pretty well.
Life goes on – even when you don’t think it should.
I am sitting down to update this blog but I really don’t know what to say.
Things that gave me much joy today:
Watching Julia try on a new dress and seeing her smile and excitement about it.
Having Lauren ask for Nathan, who was lying on the couch, and watching her recline on him and smile while watching TV with him.
Watching Luke and Julia cuddle before bed and looking at their beautiful blue eyes next to each other.
Other things were pure hell today – much more horrible pain witnessed.
Yesterday I had a discussion with Luke about Nathan’s future and lack thereof that I wouldn’t wish on any married couple.
So – I am wiped.
And..I have an out to stop blogging as I have a Frosty awaiting me now!
I don’t think there is anything much worse than watching your child suffer. I can’t believe we have crossed into this place. I knew it was coming. I have hope we can control it better. He woke up a few times in the night with pain and most recently at 5:00 am. So – I am awake now. I have a monitor next to me and I can hear his occassional sighs of discomfort. I really want him to get to have his birthday party today and enjoy it a little. In December I really didn’t know if he would be alive in June. He has done so well that I have let myself hope for more time. My superstitious side has been worrying about the month of June. He relapsed in June the past two years and it has been my fear that this year he will die in June. Recently, I have felt optimistic that would not happen. Now, on June 1, I am not so sure.