I was reading another blog recently and there was a small portion of it in which the writer (a mom who has experienced her own form of suffering) discusses faith and perception of others. I completely identified with her discussion because I’ve wondered them myself. I wonder if people perceive my faith as a sort of naïve way of viewing life. Quite honestly, I could understand why someone might think that. I could see why someone would look at me and think ‘she has no idea what she’s in for in the future’ or ‘there are a lot of struggles ahead and she’s being ignorant.’ It wouldn’t be an unreasonable perception, but the truth is, no one can imagine this life until they’re in it. When I was in the depths of grief, the one hope I had was based in faith.
That faith has carried us to today. Regan had her four month post-op appointment with our Cardiologist and got a five star, A+, never-looked-better report. In the depths of despair, I never could have imagined how happy and healthy Regan would be. That despair has made me appreciate the everyday, ordinary love because I’ve faced the harsh reality that those ordinary days are precious. Every day with her is a gift. So what do our ordinary days look like these days?
Regan generally sleeps through the night (we’ve overcome the 3AM wakeup calls! *knocks on wood*). She wakes up around 6 AM, happy as a clam and eats her first bottle. She watches the morning news with me and usually takes a morning nap. By 9 or 10AM she’s ready for breakfast, her first baby food meal of the day. She’ll work with me and play for another hour or so, then she takes a bottle chaser followed by a little cat nap. Afternoons are therapy work, more eating and play time, then pretty soon Daddy gets home! Baby food dinner around 5 with a couple more big bottles and she’s snoozing by 8:30 every night.
Regan comes on walks with me, runs errands with me, “helps” me work (but really she’s so cute she’s more of a distraction than anything). She’s strong and happy and the thought crosses my mind daily that I can’t imagine this world without her. Regan is in therapy sessions weekly where we work on building her strength in all areas. She’s completed and ACED her first milestone goal of complete head control. Her next milestone is sitting independently and she’s working hard to get there! Regan (and I) have to practice her learning bracing her upper body by holding her arms against her knees or on the ground, which will allow her to sit independently. I knew Regan would have low muscle tone before she was even born, but I wasn’t sure what to expect. I read descriptions that included words like “floppy”, similar to a “wet noodle” and that Down syndrome babies will “melt” into your arms. The best way I can describe it to you is by comparing to a typical baby. Where a typical baby will naturally stiffen her legs to stand when you hold her up, Regan will stiffen hers for a brief second before falling into your lap. When I hold her on my hip, I still need to brace her upper body with my hand, whereas a typical baby would hold herself up. The secret benefits of this hypotonia is that Regan is EXTRA snuggly, loves to be held, and fits perfectly in your arms.
There are new things I’m learning every day, and maybe sometimes that means I’m ignorant today, but if there’s one thing Regan has taught me it’s to appreciate and celebrate all the minutes with her.