Tuesday, August 25, 2009

What a difference a year (or 3) makes

Today I attended a support group at our local children's hospital for parents of children with kidney problems. It is the first time I have been to the group in awhile and it was strange to be one of the more 'experienced' parents there. I can remember my very first time there - Ashlea had only just come home from hospital and life seemed kind of crazy. Actually as I think back it was quite crazy.

Today at the group I met another set of teeny tiny twins (and their parents) who survived TTTS and now one has chronic renal failure. It was like a little flashback. Two tiny ex-prems, feeding problems, reflux, weight gain worries, naso-gastric tubes - it was all so familiar.

And yet so distant.

Yes, Ashlea still has many issues (high support needs is the new euphemism I believe), but we have come so far from those days. Not just in the practicalities of feeding, sorting out her reflux, getting rid of those awful NG tubes, but mainly my overall level of worry. Of course I still worry about Ashlea's future. My big unspoken worry always is that she might die (I don't waste my time worrying over trivial things anymore!) . But I have realised that I am making progress - I don't worry about this all the time like I used to. It is still always in the back of my mind - but that is the point - it is now at the back of my mind - rather than always at the forefront taking up space and energy. Mostly now I just enjoy her.

Things that were such a worry at the beginning are now 'normal'. Things that were so unfamiliar in the beginning are now second nature. The difference is that I know Ashlea now. I know when she is sick and when she is well. I know what she likes and what she doesn't like. I know her. I also know practical things like how to navigate the hospital system. I know when my child NEEDS to be seen by a doctor. I know when it is better for us to stay away from the hospital (hmm that would be 99% of the time). I guess what it boils down to is that I know my child best, and I now have the confidence (mostly) to say that I am the one that knows what is best for her, - and if that means checking her out of hospital against doctors orders then so be it (and yes I have done it).

Its funny how you don't realise that these little changes are taking place, but seeing new parents back at the beginning of the journey (not that we are that far along in ours) was a nice reminder that we have actually come a long way. A long way from worrying about every feed, every weigh-in, every appointment, every illness.

So - thanks for the flashback! It was nice to be reminded that we have actually made a little progress down this road. And if there is anything I can do to help any of you who travel this road with me - just say the word.


Belinda said...

Great post Alison! You have come such a long way and this was great to read.

You certainly do know your child best and you are an inspiration to others who will be travelling similar paths to you! xx.

n0thingbuteverything said...

Wise wise words Alison!!

While our journey has been very different from yours, I absolutely agree that one of the best things about S being older now is that I feel so much more empowered and generally feel that for most things, I feel confident enough that I know how he's doing. I LOVE not having that feeling of having to depend on doctors and specialists to know how things are going.

You're a fantastic advocate for your little girl and I bet you were a great source of inspiration to some of the other families there xo

Sarah said...

Ashlea sure has made some wonderful progress over the time I have known you online.

Again, I totally agree with Dianne...you are a fantastic advocate for Ashlea!