Baby is always right on schedule.*Not so little. Never ever gone.
Last week as I was scrolling through recent posts on Cheerio Road; I felt a broad smile cross my face as I recognized the above post of hers. I clicked on the comments section and sure enough- there I was- the newly minted mother of a two month old recently diagnosed with Down syndrome recognizing a gleam of light and inspiration in another mother’s worldly words. I’ve always enjoyed Maezen’s words and had read her book Momma Zen when Zuzu was a little bundle. I was glad to find a continued connection to something I loved and a momma’s view whom I found comfort in the past and now could still relate with my situation. I can’t even begin to tell you how normalizing that was for me at that moment. I had just returned to work and was spending my days wondering quite frankly how the Quail might compare to the other babies in her class- would her classmates and teachers accept and love her? Would she fall behind and have a difficult time? Would she be happy there and really benefit as our dear EI Jodi had predicted she would?
When I read my comment to the post written 6 months ago I feel like going back and patting that newly minted momma on the back and telling her good job for seeing the truth in the above words for the Quail. You wanted this to be true and in a few months you will know that it is down to the very core of your heart. Just hang in there. You become your thoughts.
What a gift her words were then and what a gift to feel them again. Thank you Maezen.
We went to the park one day, in the very merry month of October….
While last Sunday was Zuzu’s first ride on her shiny new tricycle; her little sister also got a turn for firsts- her first swing ride! And she LOVED it! She was all smiles and giggles. It was a beautiful day for it and it was so wonderful to watch the girls swing and giggle together. Zuzu was about the same age when it occured to us to take her to the park and ride on the swings. It has remained a top activity choice in her repotoire and looks like the little Quail will be following suit.
Thanks to all of you who inquired as to our wellbeing after last week’s Quail post. Thursday was the last day of the worst of the worry and eating difficulty. It really does seem like she just had a cold and that was affecting her appetite and sleep. On friday we went to OT and PT prepared to tell Kathy that we thought we might be done with trying to nurse if she was now doing so poorly with the bottle and it was affecting her sleep. We had been to the cardiologist and the GI dr that week and there didn’t seem to be a clear cut medical cause for the difficulties and she had no fever and was playful inspite of the decreasing amounts of food and sleep. Perhaps it was also a little growth and developmental spurt taking up her time, her focus and her energy. We went into OT and I told Kathy about what a difficult week it had been. She suggested we try nursing so she could assess if anything could be done differently or if there was something causing the problem. I figured this would probably turn into a scream-and-sob fest. But really the lesson in all of this was to just be. We don’t always have to “diagnose” every little irregularity. We don’t have to make ultimatum-style decisions about what we will or won’t do. Some days will be hard. Some days will be cake. But they are all our days. We sat down to nurse. The Quail fussed and clucked at me for all of a few minutes and latched on and nursed like old hat. 23 minutes later she was drifting off with a belly full of milk. She did pop up long enough to throw up a full ounce down my shirt. I guess the lemonade of that is that we now know exactly how much milk makes up Niagra Falls. We had done a feed and weigh and she took in 4 oz and then threw up and we weighed her again and an ounce was missing. Well not missing, more like down the front of my shirt; but you get what I’m saying here. It was fine and Kathy felt we didn’t need to come back the next week. It had also been just before that session that she had sat up for Ashley our PT. It was the best day! And to top it all of Sara Rosenfeld Johnson; the illustriave speech therapist; was at the clinic doing evaluations and she had a few minutes to pop in and introduce herself and meet us! We are thinking of signing up for an evaluation the next time so it was nice to put a face with a name. It was just a brief hello but she took the time to get down face to face with the Quail and talk to her. When she reached out to touch her face though The Quail flinched away. We questioned if that was just her stranger anxiety which she has been having a bit of a time with or a hypersensitivity to touch which she has on occasion exhibited as well. When she knows someone though she really doesn’t mind them touching her face- so I would tend to lean towards the former explanation albeit less clinical. Although didn’t I just get through saying I didn’t need to diagnose every little irregularity?
All in all a wonderful wrap-up to a hard week and we are grateful for the little bits of Zen training in our lesson in letting things just be.
Honestly I started out thinking much like Dana. The first “dream” that came to mind was an earlier post of mine about “family goals” updated in photographic style- pictures of us reading ,doing yoga, cooking, ourfamily and friend visits and travels. Really our day to day lives are often so full that the ability to enjoy these simple pleasures in life feel like dreams. When we actually experience these blissful moments, it does seem we pass through them in a dream like state only to awaken into the toddler-screaming, baby-barfing, I’m-running-late-again, none-of-the-laundry-has-been-folded-in-a-week, we-are-eating-cold-hotdogs-again-for-dinner, the-camellia-you-just-spent-$40-on-died, haven’t-slept-long-enough-to-fall-into-a REM-stage-sleep-in-over-a-week, the-new-cat-attempted-to-eat-the-filling-out-of-the boxspring-and-barfed-it-all-over-the black-carpet reality. And just when you think you can’t take another MINUTE of it all. The meteors rain down and the house fills with the lovely smells of a roast chicken courtesy of Alice Waters brilliant simple style and Lovey bakes an apple cake. Of course if you are like me, you are probably too busy pumping the baby’s milk for the day and blogging about it while thinking you really should lose that last 10 pounds to enjoy any of it as thoroughly as you would like.
Really and truely though- I wish for people to see The Quail as she is and as a person first. And sadly in the reality that is our world today- most people will see her diagnosis of Down syndrome before they get to know her. I hope for a more accepting and loving future for her. That is my dream.
The hubby of The Flege Family is having open-heart surgery. His job doesn’t have disability or insurance as so many don’t these days. You can come bid on some nifty items up for auction or just make a donation. All proceds will go directly to the family to help them out in their time of need. They would do it for you- so let’s show em that they aren’t alone!
Please help get the word out on this opportunity and post it on your blog or FB status or My space!
1. “Too many” dinner invitations (um there’s never really too many!)
