I think for the first month I took the Social Worker's advice to heart to just enjoy my baby. I don't think she really meant for us to take that long, but it was what I needed. I needed the time to pretend that all was going to be ok. In fact, I think in a way, to just ignore it and maybe it would go away. Maybe someone would tell us this had all been a joke.
In the hospital when Trinity was born they had wanted to do a blood screening to test for Downs syndrome. They were not able to because she was too small and could not seem to get enough blood from her. I think I took this as a sign that maybe they were mistaken and it was not true. We went a whole month this way....
At some point we had to come out of our denial and the Doctor asked us to see a geneticist to get an official result. Today we went for her testing. The Geneticist was very nice and she carefully explained everything there was to know about Downs and I STILL kept thinking to myself that this was not going to come back as Downs, but just as a mistake. As the Doctor examined Trinity she said that she was certain she had Downs syndrome but that with the testing we would find out what kind: Standard Trisomy 21, Translocation, or Mosaicism.
Standard Trisomy 21 occurs when the extra chromosome comes from either the egg or the sperm. There is an extra identical copy of the chromosome in each cell. Ninety to ninety-five percent of all cases of Down syndrome are this type.
Translocation occurs when the extra chromosome attaches itself to another chromosome. It does not join the other two number twenty-one chromosomes. The extra genetic material in the cell is the same, leading to the same clinical picture as standard Trisomy 21. This accounts for three to five percent of Down syndrome cases.
Mosaicism occurs when some cells, but not all the cells in the body, contain the extra twenty-first chromosome. As a result, these individuals may exhibit none, some, or all of the characteristics of Down syndrome. This occurs in two to five percent of cases.
When she described these I was praying that Trinity would have Mosaicism, but I think this was more for selfish reasons as I knew in my heart of hearts that she would be Tri 21.
Translocation is Hereditary and the gene would have been passed from one of the parents. When she told us that if Trinity had this then they would want to test both of the parents and eventually Tristan would need to be tested. When she said this my mind started racing. Now I was learning that not only could it be one of our faults, that one of us could be a carrier, but we have also done this to our son. Our daughter will never be able to have children and now I am hearing it is possible that our son might not either! Do you know what this does to a mother?
I must say that even with this knowledge I managed to keep it together during the office visit, until.....
This whole time I have been fixated on keeping my daughter safe from someone taking advantage of her. How will we, how will I as her mother, keep her safe. Until this moment, sitting in the doctors office, no one has spoken a word about it. It is tip toed around and I just want to scream it out and ask anyone to help me understand! The doctor looks at us and very calmly says "you will need to take extra care with your daughter, she might not be able to comprehend what is a bad touch and who might take advantage of her." I lost it. I didn't know if I wanted to hug her or hit her so I just sat there and cried. Finally someone was bringing this out and I was not going crazy!
This is a thought I believe many mothers, even of typical daughters, have thought. I have not had a chance to speak to anyone about this, or rather I have not taken that chance. I still need to process.
Another note - If it comes back that Trinity has this due to heredity then Washington and I have discussed we will not be tested. I am not sure that I could take knowing either way.
Today has been an exhausting day...
The Mommy
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