Monday, October 17, 2011

The one year plan

The quick medical summary part:

Richie's cystogram shows a a neurogenic bladder, for definite and without a doubt. This means his bladder contracts or spasms erratically and not necessarily only when full. Or maybe specifically, not when full, i.e., when it should. I have no idea if this is making him very uncomfortable or not.

The rest:

Saturday night Richie had us on the hop as he basically could not or refused to sleep. He twitched and cried and squirmed and twisted, mostly in the bladder area. I could hold him in my arms and he'd sleep, restlessly. I would put him down and he would weep. I would pick him up, settle him. Sit down. Cry. Stand up. Silence. Twitch. Squirm. Twitch.

The hours dragged by.

I woke Sean. We smelled his nappy for signs of a urine infection; debated whether it was possible he could have become infected in the day and a half that had passed since his last course of antibiotics had finished. Sean palpated his bladder - did it seem distended? We removed his nappy and let him sleep without one. We waited.

Eventually I drugged him up so much he slept for three hours. He woke at 6 fresh as a daisy.

On normal nights, I am still up five times a night with Richie. I refuse to sleep train him - the kid has enough on his plate, and I don't want to add to his trauma. I've thought about it, sure, and been tempted.

One 4AM Twitter browse threw this beacon of clarity-hope-sanity into my lap: an article by one of my favourite bloggers, Aunt Becky, whose daughter has a neural tube defect that was overwhelmingly likely to be fatal - but she lived. I read "How can I be upset with a child I thought would die?" and I was recharged. "I wait, and I watch, and I worry, and I hope that someday we will all look back on these days and laugh.
And I hope," she writes. I resolved to watch, and wait, and hope. And while I'm doing all that, I resolved to smell Richie's hair and look at his perfect little eyelids as he lies in my arms. I don't do that enough with this child about whom I am always mostly worrying. 

Read it, even if your child isn't ill. Even if he's just made you angry the way a child can drive you to the edge of your sanity.  

On Sunday, on three hours' sleep, we had a picnic party at the zoo for a friend who is celebrating a miracle pregnancy. We dragged ourselves there, grateful for the opportunity to be out of the house, outside, with children for Felix to play with, and away from the head-buzzing nausea of severe sleep shortage.

I saw some of my oldest friends. I spoke to them, as I always do, about Richie, and about our latest dilemmas.

It struck me that I am not a very good friend at the moment. I am neither entertaining or engaging or even coherent much. I tell my stories, but I don't know how well I listen to others'. My blog urgently needs a new sign-off line. I am not funny at all.

I am not a very good family member at the moment. My parents and in-laws help me. I do not help them. They come by, take care of children, let us sleep or have a quiet cup of coffee.

I am not a very 'good' wife at the moment. I have no time to talk to Sean, to play, to while away hours nurturing our relationship, enjoying each other's company.

But  I have friends and family who understand, and who are watching and waiting with us. They have suspended their demands of us until we are able to behave normally again. They send me vitamins, and treat hampers, and prayers, and babysitting vouchers, and SMSes, and fold us into their love.

I have a partner who is my teammate. Together, we live in suspense. We have suspended our relationship so that we can do the necessary, which takes up all our energy. We care for Richie, and Felix. We try to make the best decisions. We do test after test after test. But that we are a team is never in question. We check in every night, before we fall into our separate beds exhausted. "Are we still on the same team?"

We're still on the same team.

People ask me how we can do this, how we are keeping ourselves going. I could not do it without Sean.

But also, I have grasped on to a new beacon of hope. This one is the The End Is In Sight beacon, aka the One Year Plan.

Knowing how much Felix changed in the year he went from one to two years old, I know how much Richie will, too. So I have decided to wait out this year. For another year, I will live on too little sleep, which the attendant memory loss and other signs of system shutdown. For another year, I will be up five times a night. I will continue looking for better treatment for Richie - until I am satisfied that I have the right combination of muscle-building nutrition, physical exercises, continence drugs, constipation remedies, nerve stimulation, and so on, to maximise his chances of using his legs and possibly even walking by the time this year is up.

In one year's time, Richie will be able to tell me where he hurts. He will be physically and intellectually mature enough to want to walk, and figure out ways to try to do so. I will have had him at the orthopaedic surgeon, nutritionist, physio, OT, whatever is still waiting for him. (I am currently worried about his atrophying left leg; it appears to be getting smaller rather than growing. I think he needs some intervention there to encourage muscle buildup. I know he needs his splints for balance but he also needs to move his calf muscles to stimulate the muscle there. I need to figure out that mix.)

So we are on a one-year plan. We will spend another year like this, and we will have peace from the pressure at least to try to fit in a marriage, a social life, holidays, healthy living, exercise, hobbies, on top of the treadmill we are in. I find this liberating.

Of course, nothing is ever as drastic as one makes out - we will socialise, we will laugh, in one year we will make at least a dent in the 12-pack of condoms we acquired when optimistic gynaes demanded to know what our contraceptive plans were, post-second baby.

But we will free ourselves from the expectation of having to do anything more than figure out Richie and be good parents in the next twelve months.


Sekunjalo! The time will come. 

3 comments:

  1. You are still making me laugh (But with a tear!)
    You are brave! Don't stop writing these, Margot!
    It is wonderful that you have family and friends who help and who understand!
    Very soon you will be able to repay it!

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  2. Hi Margot, Dorran told me about your blog and since then I have been hooked! Never knew I was such an enthusiastic voyeur. The thing is that I really enjoy being able to get a glimpse into your life and the way in which you see the world. Judging by your posts we live very close to one another, both have sons, go to similar places with our kids, suffer from sleep deprivation and share the desire to be more sexually active with our partners. Yet we live very different lives, our realities & day to day challenges are very different.My boys are healthy. But I wanted to share with you that even though this is the case, even I at times suck at being a good mom, good wife, good friend. So good luck re the one year plan. Strength to the teammates, older brother & brave Richie. And be gentle on yourself.

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  3. Belamie! Wow, Dorran's sister, right? Thanks for writing, it's so nice to hear from old friends. Are you all well - it sounds like it.

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