Pete and I ventured out to Gigi's Playhouse (Down Syndrome Awareness Center) with Luke and Olivia yesterday for the first time. Our wonderful physical therapist, Hany, volunteers his time the second Saturday of every month to run a playgroup there. Immediately, we felt the comfort of being surrounded by others who are also a part of this journey...the same feeling we had when we did the Buddy Walk in October. The children there just exuded pure delight and happiness. We sang songs, danced, and watched as one little boy, named Paul, stole the show.
Right when we walked in, we met two women, both with different experiences. The first woman was given a prenatal diagnosis of Trisomy 18, which is actually a fatal chromosomal disorder. The doctors urged her to abort, but something in her gut told her that the they were wrong in their diagnosis. Several ultrasounds later, her gut instinct was proven correct when they found that her son did not have Trisomy 18, but rather Trisomy 21, the most common form of Down syndrome. Again, the doctors encouraged her to abort, with one doctor calling her at home to discuss all the reasons why she should not go through with the pregnancy. Well, that little guy, Paul, who stole the show...he's her son. He just started preschool and runs, laughs, plays, and dances just like any other preschooler I've seen. He signs more than 100 words, including all the words to several of the songs we sang during the playgroup. Imagine if she had listened to those doctors?
The other woman had just delivered her little girl, her first child, one month ago. Caitlyn was 6 weeks premature and spent several weeks in the same NICU as Luke. Our experiences were much the same... they also did IVF with our same doctor, delivered at the same hospital we did, were given the diagnosis just after delivery, had all of the same NICU doctors and nurses, and have many of the same doctors we have now. Furthermore, much like we did, she and her husband have been going through that wide range of emotions following the Down syndrome diagnosis. In fact, the day-to-day emotions, confusion, worry, and fear she described virtually gave me chills as it brought back so many memories. I had to fight back the tears for her, just in knowing how difficult and scary those first few months can be. Much like Luke, she has had to pretty much quarantine her daughter as she prepares for major surgery very soon. When you are on an emotional roller coaster and, on top of it, feel like you can't get out of the house at all, things can spiral downward quite quickly. We had many, many months of keeping Luke in his little "bubble" when he was at such high risk for getting sick, so I could feel her emotions almost as if I was experiencing them all over again. Pete and I were amazed that she was at Gigi's so soon (her daughter, of course, was not with her) to check things out, but I think it was her excuse to get out of the house for once!
As I stood there talking with these two women and we shared all of these same feelings and thoughts, I realized how much good can come out of sharing with others. I've said before how this blog has been a great outlet for me, but I'm learning now how my role in this journey is slowing evolving and growing. Though her son, Paul, is a little older than Luke, I felt comfort knowing that I could join her in giving advice and solace to Caitlyn's mom. I realized that I'm not so new at this anymore. I could tell her that all of those feelings are normal and that things will and do get better. Paul's mom and I both said the same thing...some days are still difficult, but those grow fewer and farther between as time goes on. I could see the relief on her face as she heard our stories. I could still sense some raw emotions, however, as she watched our kids in circle time. Pete and I both noticed that she seemed quite dazed as she watched. We saw a glimpse of ourselves in her, but hopefully the sharing we were able to do will help her in that process we've already been through...the growing and learning that comes with this journey and other such life experiences.
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