# Thursday, 02 October 2008

Latest news on Chaya Devoira

Been a hectic couple of weeks! Between the appearance of Chaya Devoira, a house full of builders (yeah I know, bad timing eh?) and Yom Tov, I've hardly had time to think. I've just got ten minutes now to add a post here before I get back to my washing, cleaning, organising supper, etc. I'm learning how hard it is to be a Mummy, and appreciating once again how much she does the rest of the time!

Anyway, they finally came home from hospital on Tuesday 21st Sept, one week and two hours after the Boss went in. Everyone was delighted to see them, even though they spent a lot of time hiding upstairs trying to get some rest. Chaya Devoira was turning a delightful shade of yellow, which was actually a cause for concern as she is small. She was sleeping pretty much the whole time, and not feeding a lot, which wasn't helping her fight the jaundice.

As a result, we had a call from the midwife on Friday morning who told us to get Chaya Devoira into the hospital without delay, as there was a doctor waiting to see her. To cut a long story short, she and the Mrs ended up in hospital again until Sunday afternoon. They had had her (Chaya Devoira, not the Mrs) under a UV light for 24 hours, and had got the jaundice levels down below the treatment level, and were happy that she was OK to come home.

About 18 hours later (Monday morning, erev Rosh Hashono), the midwife rang and said that the previous day's blood test had shown increased levels again, and they might have to go back into hospital. On top of the stress and emotional upheaval so far, this wasn't what she wanted to hear.

We spent the next couple of hours saying Tehillim, and B"H had another call to say that they would let her stay home and she how she got on. The midwife came in over Rosh Hashono to do some more blood tests. It seems that the levels are still too high, and we have to take her to the Special Care Unit tomorrow to have yet more tests. The poor little thing has had so many blood tests, that they are having difficulty finding a place to insert a needle. Coupled with her small size, which makes finding a vein hard in the first place, we are feeling for her.

Chaya Devoira 1st Oct 08

Anyway, on the positive side, everyone dotes on her, and she rarely gets put down (as long as the Boss allows). We don't have a shortage of people willing to look after her! Aryeh Yehuda even offered to take her at 3am when she wakes up! Given the problems I have waking him up at 6:30am on a normal day, I'm not sure how successful an idea this would be, but the thought was nice.

For those that haven't heard yet, I should mention that we had confirmation that Chaya Devoira has Down's Syndrome. The doctor suspected this when she was born, due to a slight slant in her eyes, and a couple of other signs that they recognise. It took some time for the tests to be done and results confirmed. Right at the moment, the only real difference it makes are a few more blood tests (like she's not had enough yet), and a heart scan in a couple of weeks.

It's funny in a way, as Nechoma Bryna told me just a few weeks ago that she wanted to work with Special Care children, and now she has the chance of in-house experience. As it happens, I made some enquiries about it myself a few months ago. I have been considering a change of career (fed up of computers), and think that this is an area that I would find rewarding. Again, I have the chance for some first-hand experience!

Some people have felt a bit awkward when we have mentioned the subject, so it's worth mentioning that we do not see this as a bad thing in any way. She is still our baby, and we feel about her just the same as we do about the others. She will have her own special requirements, but the truth is that every child has their own special requirements. Each one has to be treated as they need, as Shlomo HaMelech so wisely put it in Mishlei (Proverbs) 22:6 "Raise the child according to his/her way."

The Torah attitude to such children is actually very different from the secular one. Everyone comes into this world to achieve a certain purpose, and when we have done that, we return to Hakodosh Boruch Hu. Just as you give a worker only the tools he needs to complete a job, Hakodosh Boruch Hu only gives each neshomo the tools it needs to achieve its task here. Sometimes, a neshomo comes into the world that is so elevated already, that it does not need a great deal of tools to complete its task. Such neshomos come to the world as special needs children. Yes they are special, but in a much more fundamental way than the world at large considers. We are privileged (and yes, a little nervous) to have been entrusted with such a precious neshomo. The great Torah leader the Chazon Ish zt"l would stand up whenever he saw a Down's Syndrome person. He said that one should show great respect for such a lofty neshomo.

I should counter all that with the admission that we are nervous. We have little idea of what is ahead, and we know that it is going to be a hard road. Having said that, talking to other people in the same position, it seems that the rewards are infinitely greater. Apparently Hakodosh Boruch Hu thinks we are strong enough to cope, so we aren't going to argue!

The children took the news with surprising maturity. Their attitude was simply that she is special, and we need to give her even more love and care than we would have done anyway. They are very upbeat and open about it.

Anyway, I have used up far more than the ten minutes I had allocated! I have to go and get Simcha from playgroup, and the next two from school. I will end with a picture of Chana Liba (straight after a bath, hence the pyjamas and wet hair) holding Chaya Devoira...

Chana Liba holding Chaya Devoira 25th Sept 08
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