Down syndrome awareness month is drawing to a close. My final thoughts on the matter for another year. Hey, if it helps one person as they roam through cyberspace, it'll have been worth it after all.
1. Down syndrome is simply not as terrifying as it may first seem. It's a baby at the end of the day; a baby who is more alike than different. Jaime Kay's my baby. I will always love her no matter what. The rest becomes surprisingly easy.
2. Having said that, it's ok to grieve. You don't have to be thrilled and pretend it's all fine if you don't feel that way. As with all things, it's better out than in.
3. Fortunately, one day, this dreadful feeling too shall pass. I didn't feel like it ever would, and I'm still not sure exactly when it happened, but Jaime's diagnosis doesn't sting anymore. Which is lucky, because I was scaring small children by spontaneously blubbing in public places. It was a pity party for one and the only guest was getting bored. But 19 months later, I can report that it's all very firmly a thing of the past.
4. Read. Research. Read some more. It's not compulsory, and lots of people I know manage without, but it I'm never happier than when I feel I'm making informed decisions that to the best of my knowledge will enhance the life of my girl.
5. Accept all offers or suggestions of services, therapies, advice or help. At first I felt very overwhelmed by the possibilities available, but went for them all anyway. I found the best way is to keep an open mind to all possibilities. Give everything a try. You can't know if it's beneficial until you've given it a go, and in any case, if it's not working out, you can always walk away.
6. Talk with other people who are on the same journey. I found this tough to do at first, call it denial if you will, but as soon as I was ready, it really helped. It's been tricky for me because of the language difficulties and cultural differences too, but fortunately, that's what the internet is for. Couldn't be without my virtual partners in crime.
7. If you relax about it all, a strange thing happens, and your child guides you through. My girl has become the teacher. And I am learning such a lot! About patience, about parenting, about myself, above all, about love. And I have learned that it is deep and wide and boundless.
A couple of articles from today's UK press on the subject.
http://www.telegraph.co.uk/family/6448172/Caring-for-a-Downs-Syndrome-child.html#at
http://www.timesonline.co.uk/tol/news/uk/health/article6891335.ece#at
4 comments:
Great list! I wish I had known all these things in the beginning--but I think even if I had read these things back then, I wouldn't have believed it...that grieving process is so hard, but totally necessary so you can get to the good part!
I know you're probably right, Carrie, but I thought it was worth spelling it out anyway. It's just like how no one ever mentions how much it hurts when you give birth, I only ever read about brave ladies who were smiling and strong and loving it, and weren't crying their socks off every five minutes; I guess its almost a taboo to mention you might be upset a lot of times. But isn't it great when it's all over?! The sense of achievement that you've survived and are stronger than ever as a person and a family! Can't beat our kids!
i came over here from babycenter. great post.'m still in some of the stages you talked about glad to see they will pass.
Hey Sheva! What a beautiful girl you have! Wishing you the very best my friend, and thank you for popping by. Take care of you and yours!
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