In the last day or so since I started this blog, I've gotten soooooo many emails and messages from friends, and I just want to say thank you all so much for your love and support! I really don't know how I would manage on this journey without such great friends and family.
A couple of especially warming things they have shared - one friend, who I always knew had a disability but wasn't sure exactly what it was, shared that it was also a type of Skeletal Dysplasia. When he was born, the doctors didn't expect him to live more than 6 months. He is now just about 30 and leads an extremely active life which includes a silver medal from the Commonwealth Games!
Another friend shared how her baby started showing signs of problems at 28 weeks and the doctors suspected that the baby may have had some form of dwarfism (a type of SD). They monitored the baby closely and ended up having to perform an emergency C section at 34 weeks. The baby had a rough start and spent 6 weeks in the hospital - but now is a healthy 2 1/2 year old without dwarfism.
I've also been searching for other blogs written about SD pregnancies/children. A lot of them do not have happy ends - but I especially love How Life is Measured and Evan's Story, both of which talk about their SD babies who were given a lethal diagnosis but surprised the doctors by living - both do have different forms of dwarfism, but are happy and healthy toddlers now (neither of the blogs have been updated for a while though!!)
I also wanted to add, with regards to my last post, it wasn't meant to be a "stab" at anyone in particular. I was writing generically about the things that I've personally found helpful and what I haven't found helpful. I apologise if I have caused anyone offense. I know that people are just trying to help in whatever way they know how. And I know it's a difficult thing to do - so I will try to grow to be more gracious and appreciative (the comment about "completely discrediting yourself" perhaps went a little far... So sorry!!)
Thanks once again, for helping us to stay positive and for being there for us in this difficult time.
I am here from Heather's blog In This Storm and I just wanted to say how sorry I am about the diagnosis. I encourage you to stay optimistic if for no other reason, for the sake of enjoying the time with your baby. You are in my thoughts and prayers...
ReplyDeleteHi Nicole
ReplyDeleteMy name is Cushla. I came across your site when reading Heather Mohr's. Heather and I became friends via email when we were both pregnant. I too had a very high risk pregnancy, spending 2 months in hospital before my son Owen was born at 32 weeks. We were given pretty much a 0% chance that he would live. He came home 7 weeks ago after spending 13 weeks in intensive care. He is on oxygen full time as his lungs are in very poor condition, however his lungs are expected to grow to meet his needs.
Anyway, I just really wanted to pass on my support to you. I understand that what you are going through feels just impossible to survive. Nothing I can say will make you feel better but maybe to know that whatever the outcome people will know about your child and know that your child means everything to you.
We have a blog too if you are looking for a story of hope - we were some of the lucky ones. babyboyd-ourjourney.blogspot.com
My heart goes out to you xox
I appreciated your "what not to say" section. It's so hard when somebody is in a situation and you want to say SOMETHING, and nothing seems adequate to express what you feel, so something stupid tends to pop out lol
ReplyDeleteI know here in the US there is a Little People of America (I know this from watching TV lol) and it may be that there is a group in Hong Kong that you might get in touch with to help you learn. Actually, I'll email them and see if they know of anything in HK =)
Hi Nicole
ReplyDeleteI'm feeling for you. Your blog is a wonderful insight into what you're going through. Thank you for being brave enough to share!!
The scripture that keeps going through my mind right now is all of Psalm 139 (one of my favourites!!)
Love you and praying for you. God bless
I'm so glad you are finding information and blogs and stuff about this. For me, one of the most frustrating things was there was absolutely nothing out there that seemed to fit our situation 100%. But I did meet a few other people in similar situations (including Cushla who commented above) and it was such a support to have people who understood.
ReplyDelete