I took My Girlie because she has had an immense interest in the blogs I've looked at, especially of the pictures of the babies with Down syndrome. She was frequently my little sidekick those long summer months while I trolled the Internet looking for information. If there is anyone as worried about bringing Jackie Boy home, it is my sensitive Little Girlie. She turned 10 just days after we discovered our pregnancy, but she is the child who worries and frets over concerns in their minutia. I thought it would be a good environment to expose her to the facial features and the odd speech syntaxes of children who have Down syndrome. She is also on the autism spectrum but she is the quiet and introspective kind. She is the gal who hangs back from the crowd until she is comfortable joining in, and I knew for certain that when she had questions she would take me aside and whisper them. And I knew there would be questions. I'd already been telling her that The Dumpling may well have a feeding tube in his nose. He might eventually get one in his tummy. He might need to have a clear plastic tube under his nose to give him oxygen. He might be really soft and floppy. He would likely have a flat nose and the almond shaped eyes that tilt that she'd seen in so many of the pictures we'd found online of babies with Down syndrome. This would be a safe environment to expose her to all of this and more, and she did indeed get to see that some of these babies and toddlers had this equipment, and that it was okay. We'd spent the hour long trip to the valley discussing what to expect.
What I didn't expect was that she would find an instant friend within minutes of arrival, but that is exactly what happened.
These two pre-teens hooked up and were together constantly until it was time for us to leave. When My Girlie admitted that she had trouble understanding her new friend, she just patiently started over and repeated things until she was understood, sometimes just saying them in a different way. I also didn't expect that the little girls Mom would embrace me with such love and compassion. I was one of two pregnant women expected to be in attendance, but I was the first to arrive, hours before the other woman. So my new friend and I sat at a cozy table under a shady tree sipping water and getting to know each other. While I told her about my pregnancy and concerns for My Baby, she told me about her experiences with her own sweet girlie and the Down syndrome community in general. At least twice while I was speaking, her eyes welled up with tears and spilled over. It was like she was feeling my pain and fear in her heart. And she didn't try to placate me with empty promises. She told me what to expect and that it was going to be much different than anything I could imagine so far. She said that no matter what problems arose at his birth and after, there would be a support network to help us. She said I would find the strength I needed and that the DSALA would always be there with answers, support, personal visits if needed, and all the encouragement I could want. She said that Jack would be more like my other two babies than different. And she insisted that Jack would emote more love and devotion than I could fathom, even more than either of The Littles had. She was so wise. She was also honest and compassionate with me. She never minimized my concerns and she embraced me from the moment we met. When I finally said good bye to her at the end of the evening, amidst hugs and well wishes, I told her that she'd been a true blessing being the first person that I met. And she was!
Now we didn't sit under that tree the whole evening. She invited a woman she knew with a 5 month old baby girl over to join our group and after a few well placed questions designed to make me feel comfortable asking my own questions, she wandered off and allowed us to get to know each other a little and for her to let me hold her baby! This was my first ever experience with a little one with Down syndrome. And she was so very, very much like any other baby! Sweet, soft, wide eyed, and beautiful as only a baby can be! And then another newer mom joined our group and she also let me hold her almost 6 month old little girl. Again, she was just like any other baby. She was a little softer and had less muscle tone, but she was a sweet bundle of babiness and goodness, just like any other baby! Between the two of them, they shared their pregnancy stories and birth stories and answered a million questions from me. They explained what had been difficult and scary about their babies' health at birth and now, what was helpful, what wasn't, how to deal with families who were scared and friends who didn't know what to say, and just made me feel better about everything. They made me feel that just maybe it was going to be alright after all.
Then I wandered around meeting other families while My Girlie and her new friend sat together in a hammock swing sharing girl talk. The people I met were encouraging and helpful and embracing. Most allowed me to hold their babies. I don't think anyone said no, but I didn't ask everyone either. Some babies were eating, some were sleeping, but all of their parents shared information and encouragement. When dinner was served I loaded up My Girlie with plate and a soda and she quickly joined her new friend at a table to eat. I took my plate and found a space at a table and sat listening to the conversation, joining in at times, but mostly just sat watching these people who had managed to go on with their lives, mothers who continued to keep track of their active typical children while bouncing a baby with Down syndrome on the hip, men who continued to be loving husbands and attentive fathers, couples who remained a strong unit, people who were still living their lives. Their good lives. I was encouraged. Mostly I was relieved. We would be alright. Looking at these families, I thought we might just be better than alright!
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