So just recently, I made my friend, who just finished her chemo for great cancer, cry.
And for good measure, I made myself cry too.
You see, we are working on a project together about compassion and hugs. Given our respective painful pasts with illness, we think there is too little in the world and we want there to be more.
She couldn’t see how others would relate to her so I told her what I saw (and yes, the tears are coming again).
She had a life, with her family and friends and then cancer came along, threatening it all. Because cancer can kill. We don’t really say that anymore but it’s true.
Death, that constant companion to us all but who we ignore like that really smelly fart in an elevator (we all know it’s there, it’s unpleasant but we all pretend it doesn’t exist).
A cancer diagnosis brings death back into the picture and we realise
Maybe I don’t get to keep this life that I have.
As much as it brings tears to my eyes to type this, and all of a sudden my nose is really snotty, I need to say this
we don’t know what we are going to have tomorrow. And we can’t do anything about the past. We can only change now. So whether you are doing the laundry, paying bills, or are on holiday
Enjoy it!
Find something you like in the activity you are doing, no matter how small, and focus on that. Grow it and enjoy it.
From the beginning we have been very open about Fs illness – with the family and with her.
Her condition is incurable and she will always have it. I have said that myself so many times that this incident really caught me by surprise.
J took the girls with him when he went to the hairdressers, While there, F needed her medicine (she gets it every hour) and the hairdresser was asking about it. And the really typical question came
“Can they fix it?”
F answered
“No. I’ll have this forever”.
J recounted this when he got home. And I felt a little stab in my heart when he repeated what F had said. It was like someone took a knife and just nicked me in the heart.
She was so matter of fact about it. For her it is what it is. And I’m immensely proud of her for her attitude.
Yet it just seems so painful to me when I think of my little 7 year old girl saying that she will have this illness forever.
Maybe it just makes it more real.
Maybe it’s because it puts the truth into the context of her life.
Whatever it is, I guess it just goes to show that acceptance of this illness doesn’t mean that it’s ok that she has it.
Last sunday we went to a creativity workshop and open day with the girls and they loved the freedom to get really creative with their painting … and not have me worrying about getting paint on the floor. (Remember Monica in Friends? yeah, sometimes I’m like that “I want to control the fun”, keep it tidy. Shaking my head in shame).
On her way back from washing her hands F ran into a wall (in a straight, empty, corridor. I mean, how is that even possible?).
Turns out she thought she had reached the studio, turned left, her shoe flew off and she kicked the concrete wall. Hard. With her big toe. (is it wrong that I had a moment of relief at this point? the fact that she meant to turn means a lot to me)
It’s not broken. We got it checked out in the way that parents of chronically sick kids do: 4 days later. Don’t judge. The last thing we want is another trip to hospital. We do enough of that already. And it’s the last thing our kids want too. But that’s another story.
She rested up for the whole afternoon. Noone could touch it or sit on the same sofa as her, just in case they touched her (not just her toe, we couldn’t come within 1m of her).
Bedtime: the obstacle of skinny jeans
“I’ll help you with your jeans. We’ll be careful when we take them off” I said, thinking that this was a good thing. Oh, how can I still keep on forgetting who I’m talking to?
She processed this and realised straight away that this might hurt. She started crying. Really hard. This lead to one of the most beautiful moments I’ve had with her; the two of us sitting in the bathroom, she on the toilet, me on a stool.
“It’s time to take off your trousers. While you’re sitting, I’ll pull them off” I said.
“No!” she cried. And cried. “I’m scared!”
I tried to calm her down:
“I haven’t done anything yet. Please calm down. You can cry if it hurts but please don’t cry because you think it’s going to hurt.
You don’t have to be afraid. Do you know that you can choose to be afraid or not?”
She said “Yes”. (So she does listen to what I say to her).
“Do you want to be afraid?” I asked. And this is when I saw her at her most beautiful: honest, open and accepting of herself
“Yes, I want to be afraid” she replied.
So I let her. I put my arms around her and let her be afraid.
She cried some more. Then she started talking, laughing.
She let me take the jeans off her uninjured foot. Then she let me take them off her other foot. There was a lot of pausing and checking in. She was still scared, but much less so.
It hurt a little.
I carried her to bed. She slept on her back the whole night, not turning like she normally does. She told me how she was able to do it: “I kept telling myself, don’t turn, don’t turn. And I didn’t”.
This experience taught me a couple of things:
Just how amazing she is. I know it, but now I see her even more deeply.
We don’t need to make our children happy all the time.
Sometimes we get so caught up in trying to make our kids happy that we forget that they want to feel other emotions too. She wanted to feel scared. When we honour their feelings and their choices, we honour them. We tell them that they matter.
On monday night we were all sitting together at the dinner table chatting.
The girls are fascinated by age and love to play this game “when I’m x, how old will you be?”
J went big on this. “When A is 80, F, you will be 74 and S will be 70”. The kids loved it!
I watched their happy faces and tried to imagine them sitting together having fun, at those ripe old ages.
And I could. Except for F. This little thought fluttered through my head so fast that it was almost imperceptible.
“Will F reach 74?”
I didn’t have this thought about the other two.
Now, you never know what the future will bring and I don’t know what it means, that I can picture S and A in their 70s and 80s but draw a blank when it comes to F.
I don’t even want to try and interpret it.
But I just bet that all of you out there, with kids with a chronic illness, will have that same fluttering thought if you play this game.
You might even have that thought about yourself.
Is life just so much closer to the edge when you are sick?
for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.
Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.
it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.
F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).
She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.
So after 3.5 years building up to F allowing me to do it, we are back to square one.
Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).
Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.
Rock and a hard place.
(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.
so, what to do?
Unpleasant experience every 2-3 months, potentially scarring her psychologically (some more).
Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.
Rock and a hard place.
The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).
I think it’s time for some Dr Seuss
WITH YOUR HEAD FULL OF BRAINS AND YOUR SHOES FULL OF FEET
YOU’RE TOO SMART TO GO DOWN ANY NOT SO GOOD STREET
Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.
Every holiday contains some days of sickness. Every one.
This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.
S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.
Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.
She had to take to her bed, couldn’t keep on playing.
THEN she got impetigo on top. How cruddy is that? (pun intended).
My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.
You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.
And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.
My heart still aches and I still don’t know what to say to that.
Do you?
p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.
amber rahim 