My heart feels so very heavy today. I miss Rachel so much. Dave called from work, missing her too. So we cried on the phone together. It helps to know that we are both on this journey of grief together.
I guess we are still processing the information from our meeting with Genetics, which isn't a suprise. We were there for over an hour. Some things were clarified from our last meeting two years ago. Of course back then, our brains were struggling to make sense of everything at once. This time, it was hard in a different way. At the time I wanted to know how this could have happened to us - I wanted answers. (but I wanted the short version) And now, I wanted to know if it would happen again - to us, to our kids. I had planned to write about what we found out but I don't feel ready. It's much too hard right now. But if you send me a note to ask about it, I'll tell you. Or ask me in person.
For those of you wondering if we are testing specifically for heterotaxy - Rachel doesn't really fit the mold with most isolated heterotaxy cases. She presented with different issues, her brain malformation being one of them. Also she said that most heterotaxy kids do not have missing organs, they are usually just reversed? (the spleen being the exception) There is a four panel test being done in the States (not in Canada yet) to test four genes that are known to cause heterotaxy. We are requesting to have that done, but our Geneticist is doubtful that it would really give us useful information.
Walking into the Hospital was really hard too. But that took me by surprise. I hadn't prepared myself for that and suddenly I was fighting to hold back the tears. I have so many memories of being there with Rachel, dozens of visits, or times when I took the older kids over there to play indoors, just for a change of scenery from the Flames House.
As we left, with the burden of all that information, our kids didn't seem to notice. They were chatting happily about stuff, the movie we let them watch so we could talk with the Geneticist, Abigail was skipping along oblivious to moving cars....oh, to have the ability to be 'in the moment' like a child!!!
oh, I want my Joy back...I need your Joy, Abba Father. I don't know what to do with all this scary information. And the deep aching in my heart for Rachel. You know the whole picture and I see such a small part. I can't carry all of this....