After our daughter Regan was diagnosed with Full Trisomy 18 at twenty weeks our lives completely changed forever. The emotions you experience are unexplainable – even to your partner who is going through the same thing. I had been pretty lucky throughout my whole life to manage every challenge I was given. Well, that hot day in July proved to be the end of the control that I thought I had over my life. Here we were receiving the most precious gift two people could ever hope for, and she was going to be taken back. This was inconceivable for a control freak like me. I once told my husband that getting a diagnosis of Trisomy 18 was similar to being told your child has an incurable Stage IV cancer. You don’t know how long you will have this child, and you have to choose how you are going to embrace the time that you do have. There is no right or wrong decision when it comes to deciding what is best for your child because it was all done out of love. Every choice you make following this diagnosis is what is right for your family and your child.
After spending weeks of sleepless night on the Internet researching everything on Trisomy 18 I could find – I made a choice. I am going to organize every possible thing that I have control over. I fantasized what it would be like to plan her birthday parties, take her to pick out her first prom dress, and help her plan her dream wedding. All these details I had envisioned were never going to happen. This was my way of having these special moments with Regan – just in a much different way. Someone titled all this preparation as my “anticipatory grief” – it really ticked me off at the time, but I have learned to love the title. So I made a list of things I wanted to accomplish prior to Regan’s birth with the mindset that she was in the driver’s seat. She had the ultimate control on whether or not this list got completed. Everything on this list that was needed worked out wonderfully, and I strongly encourage anyone carrying to term to consider doing the same. It helped relieve a lot of pressure at such a stressful time.
I am happy to share my list & what I did to complete it. 1. Read books on people who have carried to term with a poor diagnosis 2. Inform family & friends to make my pregnancy easier 3. Devise a way to explain to my 4-year-old son his sister’s diagnosis, and incorporate him into the pregnancy as much as possible. 4. Have maternity photos taken 5. Go to counseling 6. Join an online Trisomy 18 support group 7. Arrange a photographer for after her birth, and get items to be used in the photographs 8. Make palliative care/hospice arrangements 9. Pre-plan funeral arrangements/write an obituary 10. Create a birth plan