Past, Present & Future...
It felt like a huge weight lifted to be honest that I was no longer obsessed with seeking the "whys & whats" and could just enjoy life watching Roo & his brothers grow up and marvel at all the progress Roo was making. We had a fab summer doing many things,
making many memories that are forever etched in our minds, little did I know that when the season changed to Autumn, that it would all change yet again and I would no longer feel the peace I felt.
This had a huge impact on our lives, we had so much comments from others "how are you going to cope?" , "what if this baby turns out to be disabled too?". My husband and I spent a lot of time talking about the future, about how things would change due to this unexpected addition..We had the added issues of my health as my body doesn't do pregnancy and I rely on lots of meds and willpower to keep me out of hospital, to keep me and the baby alive. The one issue that worried us the most was if the child did have the same issues as Roo , how would we feel, how would we cope & how would our other children cope. We had a review coming up for Roo with his community paed so once the meeting was over we then told her our news and she was surprised but congratulated us and suggested that we had a chat with Roo genetic consultant and we agreed as there was one burning question at the front of our minds " what were the risks of this child having the same undiagnosed condition as Roo?". As you will have read earlier in the post that we announced Roo was going to be a big brother we were told the risks were 5 - 20% so quite low but the genetic consultant stressed to us that it was only a guess as Roo is unique and rare and the fact that his issues didn't arise till after the birth meant that there was no testing that they could do to prepare us. We could only wait and see....
No longer I felt at peace, I was frustrated at the lack of diagnosis for Roo, frustrated that we had no idea what his future holds so therefore we had no idea about how things would turn out for our new baby. I felt the desperation & longing for answers returning, I was watching the post hoping every day for the letter from the DDD study to say that they had found something, every time someone got a diagnosis I would google the rare syndrome to see if it was similar to Roo... Being pregnant and hormonal does not help I guess! I am now in my 3rd trimester of a very difficult pregnancy and as the birth gets closer and closer I find myself becoming slightly more anxious and worried about whether the baby is going to be OK or not and the impact it will have on the family if she does. Thankfully I am not the only swan mum going through this as there have been quite a few who are pregnant too and I know my feelings are normal as speaking to them they have the same concerns, the same risks. I am not alone in this part of my journey and that makes it a bit easier.
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