Archive | January, 2013

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.


A new world

4 Jan

Having Maggie has been quite a different experience from when Tilda was first born. I think I was fairly typical in feeling very overwhelmed with the whole new world and the sheer weight of responsibility felt very heavy. I am much more relaxed with Maggie and don’t seem to get as anxious or stressed out when she cries or is unsettled.

Her arrival has certainly changed the dynamics of the house though and part of me feels that I am missing out on a lot of Tilda time because Maggie is almost permanantly attached to my boobs! I look forward to the feeds settling down a bit more so I can work in some one on one time with Tilda. I am very grateful to Lex, my sister and Millie for coming and taking Tilda swimming over the last couple of weeks and can’t wait until I can get in there with her too.

As to be expected, Maggie’s arrival has also thrown me into a bit of emotional turmoil. I had quite the weeping session the other night – watching how Maggie has already grown and changed since her birth just highlighted to me how much Batten Disease has taken away from Tilda and from us. We watch one child grow and develop and learn and we watch the other regress and deteriorate. I can’t imagine my world without her and the inevitability of having a condition that is 100% fatal leaves no room for hope, and no chance for a happier outcome.

But, Tilda is well at the moment, she is cheery and bright and enjoying her days watching Dora and swimming and going on outings. Although the sword of Batten hangs over our heads and without warning could strike at any time, we ignore it.  We deny. We pretend. It is the only way. Day by day. The same can be said about living with a newborn too! Day by day, feed by feed knowing that these exhausting early days will pass and that we will get to see a first smile, a first tooth, a first step. And we will rejoice in every moment.

Happy New Year to one and all, may it bring a year of firsts for Maggie and a year of smiles and happiness for Tilda.



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