My dear friends, I pray you never stop asking…………
Early on in Livia’s diagnosis, Jake and I decided that we would try our best not to let (what the textbooks said) Livia’s limitations would be, hold us back from what we wanted to do as a family. We were and are determined to keep life as normal as possible; for our girls, as well as us. We decided that we want our kids to experience as much as we can provide. Doesn’t every parent? Especially for Livia, who can’t decide for herself; we want to show her as much of the world as possible. We want her to experience; just as it is our desire to LIV a purposeful and meaningful life. Just like the song (which is my anthem) “I lived” by OneRepublic says “I owned every second that this world could give. I saw so many places, the things that I did. With every broken bone, I swear I lived.”
This summer has been full of “firsts.” At the end of the school year, Livia had a swallow study done. I was sure that we would get some results back that showed some small changes. That day, I was not prepared for a complete change for our girl. Like I said, I was prepared to maybe start thickening her water, but instead, as I watched during the procedure, my girl silently aspirate on everything except pudding like texture. It was a literal punch in the gut after a 30 minute procedure and being sent away with a piece of paper and a kleenex. I can remember wanting to ask the nice ladies in the room with Liv and I so many questions, but I could only get out 2 questions. I was biting my cheek so hard to help keep from letting the tears fall. Thankfully, we saw this change coming a year ago and had her gtube placed. Today, Livia is getting 100% of her hydration as well as 50-60% of her nutrition through that little tube in her tummy. It’s been an easy transition, but not a welcome one. We feed her thick pureed food as often as possible to keep her brain firing. We want those neurons to synapse with other muscles in her body to make her swallow. This is real.
Another first, our home feels and looks like medical supply grand central.
In a matter of a week, Livia received a wheelchair, feeding/activity chair, and a bath chair. All of which I’m thankful for because it helps her to be more comfortable and safe. She needs it all. However, before having all of this stuff in our home, I think I pushed her disability to the side. I never viewed Livia as disabled. This equipment; the tubes, the wheels, the supports, the food in a bag, the mesh, and the syringes; it’s a visual reminder of how medically fragile she is. It’s the first time in her life that I’ve felt weighed down with the sight of “stuff.” Everyday, with every corner I turn in my house; I see something and it reminds me.
This summer has felt like a summer of “no’s.” It’s the first summer that we’ve been divided a lot. I’ll stay back with Liv, and Jake will take Finley somewhere, or vise versa. Or, we’ll go somewhere and someone has to come back early with Livia. We have to keep her on a strict medication routine. Especially at night, those meds, they make her sleepy. Now, if only they could help her stay asleep! There have been a lot of opportunities to do fun things. We have taken advantage of some fun, but it’s the first time that I’ve felt some jealousy with the things we can’t do. Jealousy is a mean and singular emotion that is just ugly. This jealousy created a pity party……..party of one. I have never in my life looked at our situation and wished things were different. Expcept for the obvious, in which my daughter doesn’t have a terminal diagnosis. But, I’ve been jealous of some things my friends got to do, that we just couldn’t. This summer has felt like we’ve been living a living room life. Liv is not walking well. She’s most comfortable on the couch. She tires out and lays down, and most often can not lift herself back up. We physically make her stand. She’ll hold on to the legs of our TV and stand. Her legs will start to shake, start to turn blue, and when she’s had enough, she will cry out. She’ll make her way back to the couch. This has been the hardest transition of all to watch.
Liv will still get a burst of energy, or have a good walking day. She still does walk, but we must be with her. This “living room life,” it’s felt isolated and sad. It’s caused me to feel guilty, jealous, and tired. But, it’s also where I know I must be.
I’ve learned a long time ago to let go of my expectations. My plans, my dreams; it’s not about me. It’s not about getting or doing what I want. It’s about succumbing to a bigger picture and a bigger plan. It’s about realizing that this living room life is right where I need to be at this point in my life. And honestly, I’m happiest on that red couch where I can hold and smell her in. This living room life, it’s where life happens. It’s where good friends gather to laugh, to cry, to pray, to tell really great stories, and to do life with us when we can’t always go out to do life with them. It’s where my purpose lies. Livia needs us the most. It’s a balance that I wish I didn’t have to take on, especially for Finley.But, I know that someday she will understand. This, unfortunately small phase in our life, is what is helping to mold her and the rest of us into compassionate and loving people. One day, when the living room life is a distant memory; and oh how my heart aches for that to be years….many years down the road. This living room life will be the foundation of our future. It will spark us to do, to LIV, to be with those that we love the most. Those jealous feelings, I’m sure they will show up here and there, and my dear friends…….I pray you never stop asking. I hope you understand. This living room life, it’s a unique and heartbreaking experience. It’s where I’ve learned that not getting what I want; it’s where I see God’s greatest blessings.