We got up bright and early - this was the big day. I lept out of bed at 5:45pm - after all we had looked forward to this day for months. Each doctor, each new medical institution brings with it new hope, excitement and a little nervousness too.
Perhaps this would be THE DAY - the day when we find out what is going on, the day - maybe it will put an end to the waiting , concern and uncertainty - maybe will get a diagnosis... Or will it open a new can of worms - whatever it is we are moving forwards and we need to do that.
Anyway I got the girls ready and we had breakfast at around 7am before heading to my brother-in-law's house. My husbands parents and my sister-in-law were waiting for us - we deposited our kids with their grandparents and cousin and then my sister-in-law drove us to the hospital. We really are so lucky to have so much wonderful support from the family. Everyone keeps coming together to help us and at least it means that the other two girls can enjoy their holiday. Despite the anxiety - this is one of the most beautiful things that has struck me at this difficult time - I have received so much strength and support. Friends calling up - even acquaintances that I barely know come up tome and offer to help; Talia beautiful toothy smile and warmth attracts people from everywhere. Her drastic small size alongside her adult expression and questioning eyes attact attention from everywhere.
The hospital was really very nice - very well done up and professional looking - quite different from the Spanish equivalent. The hospital was huge and spotless - I know that you should never judge a book by its cover but regardless the efficiency and cleanliness did help me to relax. This alongside my sister-in-laws presence was very soothing.
We were seen quite quickly - my husband and I are used to spending hours at hospitals - he always brings his computer and sets up a mobile office but this time the wait was quite short and we sat chatting to my brother and sister-in -law.
The Dr was very professional. He gave us lots of time and attention. He already knew what to expect as he had studied Talia's results and photo prior to our visit. After a thorough examination and full patient history, he explained that he had expected Talia to lookk more 'syndromey' - she looked better in the flesh than in her photos. apparently her facial muscles seemed more droopy in the photo but here in person she seemed to have better muscle otne in her face. His main concern was her weight - she is way under the charts and is diverging from the norm rather than converging and this troubled him.
He finally looked at us with a frown on his head and a look of concern - he was kind and empathetic and obviously what he wanted to tell us was tough and he did not want to be the bearer of bad news.
Anyway he said that we needed to check her brain development. He was concerned that the 26 week bleed had caused gross damage to the brain and felt the next step needed to be an MRI scan. We discussed this and then he agreed to call us that afternoon with an appointment for early on in the following week.
My husband and i came out in a daze. Thankfully his brother and my sister-in-law were with us. We were strong but I could feel the tears welling in my eyes. One side if me wanted to ball my eyes out and the other side of me just kept saying,'you're fine. Look around you. You are so lucky - you have two beautiful girls and this gorgeous baby - don't give in'. Then I tried a yoga tool called 'Pracktipakshabhavana´ -replacing negative thoughts with positive ones. I thought of numerous cases that I knew of - parents with twins who were both severely handicapped and where the parents couldn't even afford a pram, children dying and living in war zones and I also thought of many kids who do suffer brain damage and still manage to have relatively good standards of living. Deep down I know that we will play with whatever card we are dealt and that we will cope no matter what. Nevertheless it was an emotional day and my heart felt heavy - I had a dull ache in my heart. I looked into my husband's eyes and knew that he felt the same - we are in this together.
Our family were fantastic and I was pleased to get back to my mischievous kids. We stayed with my sister-in-law until after supper - we needed the emotional support that the family were providing for us
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