Twenty years in and finally realizing asking for and needing help doesn’t mean I’m failing at being “her” mom… or just being human. As I’ve been preparing for her medical transition to adult care, I keep coming back to the intake appointment to the Medically Complex Program at Children’s. Nurse Heather said to prepare that the intake would take at least 2 hours, in reality the appointment lasted 4 hours. Throughout the appointment I had moments of sheer overwhelming raw emotion- where tears flowed and I kept saying, “So she really is more. She really is harder. I’ve been doing all of this alone. You can help me?” Heather just kept saying yes, it’s okay, children like Ivey is one of the reasons the Program is opening. Parents like you need help managing her healthcare. It’s a lot. I kept apologizing for crying. Needing help feels like weakness. Silly, I know. Still, with the Medically Complex Program, her schedule requires vigilance. Here we are, on the countdown to a place where the supports from the internal system will be removed.
Twenty years in, we are more experienced; however, we, I am also older. The mental and physical demands look and feel different. Our bodies are older and physically weaker. I know the challenges ahead and there is also a land of unknown. Still, I can remember the exact conversation with an acquaintance just weeks after Ivey’s birth that put my wall up that me having weaknesses somehow reflected on Ivey, or that I wasn’t strong enough to be her mom. As I say this I can see Tami rolling her eyes and giving me a “talking too”. We have incredible family and friends who have helped and supported us every step of the way- and in my mind, there should have been a cut off date where we had our feet under us and not needing “help”. Truth is: We have had our feet under us - I have- for years, but I need help notwithstanding however experienced.
Ivey is more. It’s that simple. Yet, it’s that complicated. The glory of social media is seeing other moms write something right out of my brain- and I think, “me too". - So it’s not just me. The hardest part is allowing myself to ask and not feel the guilt of asking for another’s time. The other hardest, taking that moment to do something that is viewed as rest. Rest feels like guilt. Just over a year ago I made myself to restart taking 60 minutes every few days to go to my basement and workout. I had to. Ivey is heavier. The wheelchairs are heavier. I am older. Plus, I missed being the person in the mirror I once was. Vanity kicked in - is that wrong?
Matt and I are in a season where our bodies are demanding we - I - ask for help. Matt and I both are wrestling with back and neck issues because we are becoming "old people". Years of lifting wheelchairs and people are catching up with us. With healthcare changing, and in the medical care transition in the months to come, I need help with the moving components, the meeting of new doctors, making the drives, weighing the decisions, and talking things through. Physically, we need some hands-on learning of Ivey.
No one can compare themselves to myself, Matt, Knox, Walker, or Ivey's girls. Our little family of 5 has had years of hands-on training, with lots of mistakes I might add. Ivey's girls are a unique brand of twenty somethings - and fearless. They come in during their college years with zeal and enough naivety to become extraordinary. They come into our home, I teach them, they learn from each other - and they run like the wind. Seizures may scare them, but they know what to do and that fear becomes awareness. Feeding pumps - they learn how to work. The list goes on... they learn, find their comfort zone, and next thing you know, they throw Ivey in the car and they go. Ivey's girls adapt and see her medical as a mere part of Ivey, not who she is. But I see the fear it in the faces of others. I know there is a fear of not knowing what to do or feeling like you don't have the skillset. I lean away, I guess, because I feel like it is protecting everyone, not just Ivey.
Here is the secret I will share in part of my stubbornness to ask for help: I know Ivey intimidates others. People see us or Ivey's sitters and feel like they can't do what we do. I had to learn and I still second-guess myself every single day. No one has to learn, but inside, I want all of our people to learn. Maybe not all of it, but a part. We need, truly have a need, for people in our village to also learn to harder parts (seizures and medical trivia), the physical parts (PT routines, OT routines), or her communication parts (signing) and a huge need, helping us teach Ivey how to use her AAC device (Ivey's Word iPad). She named it. And look, we are ALL trying to learn how to use that blasted thing. I need help. There, I said it. I need help in various areas. Not everyone need to know all areas, just help where comfortable-ish. And, I need some to step completely out of their comfort zones and learn the really hard parts. We need everyone to become a somewhat expert in parts so that there is a complete whole.
I know I don't have to carry it all, but setting some down, or having someone help carry part of this life with her is so hard - maybe it is having strength to ask that really overrides the weakness in thinking we can do this all alone.... I am not sure how all of this fits together. I don't have the answers for everything. I have a lot of "I don't knows" right now. In the end, what I have always known, Ivey was made for this world, all of her. Letting others in - by asking is the only way through. It really is that simple, yet so hard.
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