And repeat!

This week has been rather lovely for me and Owen because all three of his therapists have gone dun a bunk and he hasn't had any Speech, PT or OT.  Which means I haven't had to clean the house in preparation for their visits (because, let's face it: if I didn't HAVE to clean the house, I WOULDN'T clean the house), and we've had some more free time than usual.

However.

Because this is the sixth month of the year, and because I am a diligent, organised parent, a lot of Owen's routine appointments have cropped up and I have chosen to attend them instead of buggering off on holiday for a week or seven.  This has meant that two appointments, genetics and Stepping Stones, have occurred back-to-back in the same week.  And neither of them are up at CHOW or at my own house, so it's kind of a bitch to get to them and remember how long they're going to take.  Anyway, genetics was yesterday and aside from it being a colossal waste of time, it was rather nice to present my son to them and go, "SEE? Isn't he MARVELLOUS?", and for them to go, "Oh yes!  What a lovely little boy you have there, and what a REMARKABLE job you're doing with him!" in return.  Which is what always happens at these types of appointments.  Honestly, I think there must be some real douchebag parents out there, because whenever I see any of Little O's specialists I'm always commended on my parenting skills - particularly my ability to remember which medications he takes, which doctors he sees, dates, times, and past medical history, all without referring to something I've written down.

The trick to remembering it all is quite simple: repeat.  Often.  At least once a week.  Tell every doctor, therapist, nurse, specialist, interested friend, and family members as often as possible, because chances are they won't have remembered a single sodding thing from the last time they saw Little O, and haven't bothered to look at his chart before they entered the room.  Trust me, you can get a reputation as an outstanding parent very quickly if you are forced to repeat, repeat, and repeat again your son's medical history every time he sees someone.

The thing is, I'm usually a wreck.  Emotionally and physically, I'm a wreck.  Because attending appointments means adhering to someone else's schedule, I always arrive looking and feeling completely frazzled.  I can't remember the last time I bothered to dry my hair instead of sticking it up in a mess, and as for make-up or checking to see if my clothes are baby-fluid-free ... well ... let's just say they're low on my list of priorities.  I turn up at least five minutes early, because to me "on-time" is late, and I have always, always busted a gut to get out of the house with a semi-clean Little O and chewy toys, wipes, diapers, special butt cream, clean t-shirts, clean trousers/shorts, several burp cloths, wallet, diary (planner), phone, car keys, and feeding supplies if they're needed (milk, water, bottles, extension tubing, 60cc syringe, 10ml syringe, bib, sippy cup, semi-solid food, bowl, spoon, plastic baggies, freezer pack, insulated bag).  And it always takes me an hour to get to most of our appointments, so I have to shift Little O's feeds around to make sure he's done puking by the time I sit him in his car seat.  It isn't fun pulling over on to the hard shoulder to mop him up; oh no, it isn't.  Today for example, I was up at 6am just to make sure we arrived at our 10.30am Stepping Stones (SS) clinic appointment on time.

That, quite frankly, is ridiculous.

It's also ridiculous to ask me to add a single sodding thing to my already scheduled-to-death life.  The therapists we see at SS all make very helpful suggestions whenever we go, and I'm always pleased to see them, but they make it sound SO simple and they need to know it isn't.  Asking me to prepare fresh baby food instead of shop-bought is just not an option right now.  I don't have the time to dry my hair, let alone mash some vegetables up!  It's completely maddening and today I was kind of at the end of my tether.  I sobbed quite a lot this morning before I left the house and I just didn't have the patience to sit through another "helpful suggestion", so I told them quite honestly the things I was, and wasn't, prepared to do.  And making fresh food for a child who will not eat anything at all, is so low on my list of priorities that it doesn't even register.

Wait one sec ... this post is nowhere near finished, but Little O has a stinky bottom and the phone's ringing.

To be continued ...

Tina.

Our (not so) secret plan

We're going to have another baby!  Well, not RIGHT now, but at some point before this year is up we're going to start trying to have another child.

We love Owen, and one of the reasons we've reached this decision is to benefit him.  He doesn't attend a nursery or day care centre, so the amount of interaction he has with other children who are of the same age as him is very limited.  It would therefore be lovely if we could provide him with a playmate, and, given Owen's developmental delays, the differences between their ages would be extremely small.  We also feel that each child would benefit dramatically from having a sibling so developmentally different from themselves.  After all, my younger sister is extremely delayed, but Anthea and I have nothing but good things to say about our experiences growing up with her.  She has also benefitted from having us 'normal' siblings around: you can tell she loves us and remembers us each time we see her.

For a very long time, Mike was prepared to have another baby and I said a definite 'no'.  I was (and to some extent, still am) extremely nervous about taking care of two small children by myself during the day.  Owen's feedings have been so traumatic for me that the thought of mopping up sick with one hand and breastfeeding a newborn in the other just made me break out in a cold sweat.  Owen also has so many appointments that my concerns about spending adequate time with each child, and just being able to MAKE all those appointments, has seemed very daunting.  My mental health has already suffered in the past year; what's to say it won't spiral even further out of control with the responsibility of another baby?

Well... in the last month or so, life has started to slowly, slowly... creepingly... improve.  We changed Owen's formula recently and his feeds have not only been more successful, they've also been quicker.  It has meant I have more time to devote to playing with him, doing my own work, and taking care of jobs around the house.  Also, now he's turned one, his appointments are starting to ease off a little.  He's had as many surgeries as doctors initially anticipated he would when he was born, which means that although we still need to attend yearly appointments, things won't be on the same scale as they have been over the last twelve months.  It's true that we have to start dental care visits, and some appointments won't ease off at all, but Owen's body has responded so incredibly well to a growing and healing heart, eyes, head, and brain, that most of the specialists we see are already scaling things back.  These changes have been so small, so incremental, that to anyone else they're barely visible, but to ME, they're the difference between health and misery.

For the last six weeks I've been seeing another therapist, and Mike and Owen attended a session with me last week.  I feel very good about this course of therapy, as she really listens to what I want, and allows that input to guide my treatment.  For example, I think deep-breathing and listening to whale music will do jack, and I smirk loudly whenever people talk about it.  Reading a book she's lent me called Coping with Infinite Loss and Grief, however, allows me to analyse my thoughts and behaviour from an analytical standpoint - which is much more up my alley.  I also love the fact she has evening hours.  It makes such a difference to not have to bring Owen along, and to return to him fresh and allieved of dark thoughts, just in time to put him to bed.

So, the upshot of all this is that I have an appointment to get my last shot of Depo Provera tomorrow, and that will be it.  It will wear off in September, and Mike and I will allow nature to take its course from that point on.  Apparently the hormones in Depo can take several months to wear off, so I'm not anticipating a baby arriving next May, but it's kind of nice to have a timeframe in mind.  Maybe by Christmas I'll have some good news.

Tina.