My mom uses this phrase when she describes the way the Marine Corps would prepare everyone, my dad included, for deployment. I find myself feeling similarly, and it isn’t my favorite state of life.
When Maggie was born, we were in the throws of everything. People were coming in asking questions and telling us the plan of care for Maggie and what our responsibilities were. It was maddening. I finally told Carlos, “I wish everybody would just slow down! This isn’t going to be solved today. Why is everyone rushing to tell us what to do!? I just want someone who can understand.”
I wanted someone to understand that I was still sad, still upset, still reeling from finding out our little Maggie had Apert. Not ten seconds later two nurses walked in and announced, “The pediatrician needs to see her.” I was feeding her at the time and responded that she was just about done when one nurse reached over to unlatch Maggie from me. I gave her dagger eyes and unlatched Maggie myself and handed her over. Carlos gave me a sympathetic look before going with Maggie and the nurses to the nursery and I looked out the window and said a prayer, “Send me someone who understands.” The words were barely out of my mouth when knock, knock on the door and in walks a doctor to check on me. She asked how I was doing and I vented to her of my frustration with how fast everything was going. She smiled and said, “I know how you feel.” She explained that her daughter was also born with a genetic disorder. I spent the next 15 minutes pouring out my interiority to this stranger turned friend. We cried and laughed and she shared with me her journey and struggles. It was the most amazing answer to prayer.
Now that we are out of the hospital and have a pretty good assessment of Maggie’s needs, nothing is as urgent as was originally assumed and we have entered the “wait phase”. Namely, wait for appointments. In April we planned a trip up to visit two craniofacial teams. We met with a great team in Wisconsin and then had to cancel our appointment with Chicago because… stomach flu! Yes folks, the dreaded stomach flu. I know everybody will be as excited as I am when this nasty virus/flu season goes away. We rescheduled Chicago for later this month and in the meantime we sought out a second opinion from a team in Boston. We did an online second opinion and were pleased with their ideas for care but are holding out on decision making until we have everything before us. Overall, it does look like Maggie’s first surgery will happen sooner than a year. The concern is her brain growth, and that is priority. The question remains, who can offer her the best care.
In the meantime, Maggie is gaining weight and her nasal passages are getting larger and that means her breathing is a lot less nasally and not as obstructed by mucus. (Shout out to my mom who cringes at discussion about gooey green boogers, Happy Mother’s Day!) We did have a bit of a bump in the road around 6 weeks when Maggie had been pretty fussy, to the point that she was crying pretty much continuously while awake. We knew that severe reflux was common among kids with Apert so we used gripe water but it just wasn’t cutting it. Through some trial and error we discovered 1) she has the same intolerances as two of her siblings but more severely and 2) she was crying because she just wanted to lay down by herself. So no more soy oil and soy lecithin for Mama, and Maggie gets her space. Hopefully this continues to give her peace and comfort, if not, we will be looking at other causes and remedies.
How are the rest of us? We are just trying to find the “new normal” with babe number 4. The other kids are still absolutely enamored with her (aka cannot stop touching, cooing and loving on her) and their consistency amazes me, considering they are the least consistent people I know. Kiko now tells me, “Mama, I love you….but I love Maggie more.” We are back to homeschooling after a BIG break. Carlos has been helping me a ton by using his vacation to go into work later than normal, allowing me more rest and time to get myself and the house going. Now that Maggie’s reflux is a bit more under control I am hoping life will be a bit more docile and my stress levels with subside a teensy bit. And in big news… Juan has learned to ride his bike without training wheels and we are all super proud of him.
In the midst of all of this, we have been surrounded by the most amazing network of family and friends. The prayers, the meals, the visits and calls to check in have been a real source of peace in this journey. I couldn’t imagine this journey without all of you. This “thank you” seems such a measly offering considering the amazing amount of love that has been poured out upon us, but there is no way that I could ever repay what has been done. I can only offer you to Jesus and pray that He fills your cup to overflowing.
Two for Joy 