It’s Thursday morning. In our new world of never ending therapies and our constant quest for language, this is the morning where Joe takes Gigi to Hearing Clinic (I know, she doesn’t hear, it’s confusing, they work with her on processing language. In her case, this means ASL). This is the one hour I have all week where I’m not 1. With Gigi 2. At work 3. On the treadmill or 4. Passed out. Life moves at breakneck pace around here. I have about 56 balls in the air at any moment. Over the past two weeks, I’ve dropped about 16 of them.
Work is hard. I’ll admit it. It’s hard to have 20ish people counting on you to make payroll, fix things that are broken, balance the budget, administrate their very necessary benefits (health, dental, retirement, etc) when you’re doing all the same things for a nearly equally large group of people that live with you.
School is hard. My gosh, I didn’t expect this one. School has always been my ally when it comes to the running of this large and in charge family. Middle school, you stink lately, both the peer group you offer and the quality of education. I had to take a long hard look at whether or not I want our kids to be part of these three years of absolute hell. Thanks to a night of time away with some like minded mamas, I realized the value these experiences have in shaping who my kids become, and that maybe the middle school is truly doing the best it can right now. Our education system is so broken. For my kids who are enrolled in middle school currently, yanking them isn’t the answer. We’ll keep going, one foot in front of the other. I need to offer up help and see if we can do better together. For the first time in four years, we’re not adopting again. It’s time to volunteer a little more at school and complain a little less. It’s time for my kids to learn that a free education doesn’t mean it won’t cost you in time, energy, and patience.
Health care is hard. Tess and Gigi saw their Cardiology team last week. Tess is a rock star. One year ago, yesterday, she left the hospital to come home with her brand new FOUR chambered heart. We celebrated this monumental anniversary with a photo shoot in the main atrium of the hospital, in front of the fish tank we had visited so many times while she was inpatient. We would take her IV pole, Oxygen tank, pulse oximeter, and we would roll it right up to those fish, like it was a parade of celebration. She would last about four seconds, then we would roll the show right back to bed.
It’s hard to even fathom that now.
This was her leaving the hospital after her appointment, and after a shopping trip in the gift shop, of course.
While Tess’s road is reaching the end, Gigi is at the beginning of this long path. Tess will need lifelong monitoring, and maybe the occasional tweaking of certain elements of her heart, but the major surgeries are behind us. We think.
Gigi will need 2-3 open heart surgeries in the next few years. Her heart function is declining the way Tess’s was. We had the choice to intervene now or to wait. If Gigi had more language, I would do this while she was younger, because, less memories, easier healing. Sadly, she was given no language in her first 3.5 years of life. I have no means to explain to her what’s happening. Can you imagine? She would be so scared. So, we’ll wait. We’ll wait until we’re at a point where we can wait no longer. That could be six months from now, it could be two years from now. We’re living under that dangling sword again. I hated that sword before. Tess has taught me that you can’t focus on that. You have to go on with life as if every day were a gift.
So, we do just that.
Gigi is an outdoors girl, for sure. The midwest enjoyed a warm snap for awhile and she LOVED it. She was outside from pretty much sun up to sun down. She climbed, slid, swung and ran until she couldn’t anymore. She is gaining strength and learning new things every day.
Earlier this week, we celebrated four months of calling her ours. There are days when I want to curl up before, and after, all the therapies, after fighting all day, all week, all month, to get her what she needs, and say “I can’t do this! It’s doing NO good! She’s SO delayed! She’s so hard to work with! She’s never going to get where I need her to be!” Then I look at where she is, where SHE needs to be, and I see all the progress she’s made.
And, because of that, and for her, I rally. I pull myself up, and I fight on.
–FullPlateMom, whose hour is almost up. Good thing too, she misses her Gigi.