Conflicted emotions

21 Jan

Tilda spent last Wednesday night to Sunday morning in respite at Very Special Kids. I had organised it in anticipation of the summer holidays, wanting to provide her with as much stimulation as possible whilst I was tied up with Maggie. All good in theory.

But it was very hard to leave her there.  Very Special Kids do a wonderful job and it is an amazing service to have available. We are entitled to 3 weeks a year of respite and the house is bright and colourful staffed by a cheery and kind mix of volunteers and nurses. But they don’t know Tilda like we do. On a couple of occasions when I went in to visit, I found that they had left her in her chair without any distractions. It broke my heart to see her just sitting there, reminding me of those awful nursing homes with elderly people lined up in wheelchairs in the corridor, staring blankly at nothing. After chatting with staff further, I know that she did end up having a good time there – they had a musician come in and do some music therapy, they played in the awesome multi sensory room and she slept well.

It was the whole idea of respite itself that bothered me though. Putting Tilda in and the fact that she is entitled to it just serves as a reminder to us of how sick she is. And that is something we try not to dwell on. Seeing her in that environment highlighted her disability rather than her Tildaness and I found the 4 days quite hard to bear and we ended up picking her up a day early.

The other side of the coin though was that there was some enjoyment in having time just with Maggie. Time away from feeds and medications and Dora! It was nice. And that it turn made me feel a bit crap, that I was enjoying Tilda being away. I know that I had no reason to feel guilty but as every mother knows, guilt and motherhood go hand in hand.

I am glad we did it but I am not sure how much of the service we will use. The fact of the matter is that Tilda is not difficult to look after, I don’t feel like I need respite from her. But it is good to know that it is there and that Tilda is now used to the environment so if we did have to put her in again, it would be familiar to her.

In health news, Tilda is doing pretty well. There have been a couple of vomits but otherwise she is bright eyed. We have had the wonderful services of carers coming to visit every Monday and Wednesday for 3 hours which has been terrific. They have taken Tilda for big long walks around the park, to the playground and swimming. We really appreciate their time.

Maggie is also well, growing nicely! She is a champion eater and a not too bad sleeper so no real complaints. Tilda continues to pretty much ignore her but sometimes tunes in and is terribly amused by the noise she makes!

Simon started back at work today so I am holding down the fort at home – so far, not too bad. We are going to head down to the beach later this afternoon for a few days with the extended family which will be lovely. Then, there is only another week until Tilda is back at school. We look forward to another great year at Glenallen.

Finally, a huge thank you to the wonderful friends and family who have been providing us with food since Maggie’s birth. It is heaven to not have to think about dinner and the standard of food has been totally amazing!! Thank you also to those who have sent cards and presents for Maggie – we feel very lucky and hugely grateful.

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5 Responses to “Conflicted emotions”

  1. Juliet January 21, 2013 at 12:54 pm #

    I am so glad that the respite care is good, even if you don’t want to use it as much as you’re entitled to and it is good that Tilda is getting some fun out of Maggie. Have a lovely time at the beach! All my love.

  2. Danielle x January 21, 2013 at 2:46 pm #

    Oh Tilda Berger, you are just the loveliest! How wonderful that she finds her little sister funny when she cries. I love it! 🙂

  3. Rads January 21, 2013 at 5:01 pm #

    Tilda cried, then I cried, then maggie laughed, and I laughed… She’s such a little trooper!

    Hope all is well, in sure Tilda enjoyed her time away but was even happier to be back with you guys!!!!

  4. cally berryman January 22, 2013 at 5:25 am #

    Dear Laura, Respites are good and necessary. And guilt is a wasted emotion. You need time and space to recharge your batteries to cope. Love the photo. Miss you at work. XXX

  5. Anne Bunting January 25, 2013 at 2:59 pm #

    Dear Laura I am sure you had a wonderful time at the beach with heaps of support from your family and hope Kylie and Janet gave you the big hugs I sent. Once Tilda is back at school life will hopefully be a bit settled and you can enjoy special time with both your beautiful girls Love always Anne

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