Twenty years in and I am finally admitting that asking for and needing help doesn’t mean I’m failing at being “her” mom… or just being human.
It's strange how having a child with disabilities distorts reality, or common sense for that matter. I was and am a different parent to the boys than I am Ivey. I parented the boys in a cluster of friends. Playdates when they were young. Sports. Drop-offs to birthday parties, friends' houses, conversations in carlines, the never-ending awards ceremonies at the school. Lunches with friends discussing parenting strategies, parenting wins, parenting fails. A network of moms doing this parenting thing - together. Can you grab them from school - I'm stuck in a meeting, running behind, late coming back from an appointment? We are heading to the beach, can your son come along? There's a stomach bug going around, did you take yours to the pediatrician? Who all is going? What time did you tell them to be home? ........Are there plans for college? Fraternity? Sorority? Major? Are they coming home for the summer or interning somewhere? ....... And recently: Where are they looking for a job? Think they will move back to Georgia? Girlfriend? Boyfriend? Are they dating seriously? ......
And then on a separate plane in the same universe, I parent Ivey. We were surrounded by friends, all eager to help, happy to love on her, there is no doubt. But as for parenting in a gaggle, I parented her in a very isolated bubble. The cluster of friends was there, but the experiences of parenting much much different. Somewhere in there letting others help became hard. There isn't one reason, or me being stubborn, or thinking others don't want to help, it's much more complicated. The milestones were so extreme. Frankly, everything was polar opposite and upside down and inside out. During the long hospital stays and grueling surgeries, I had a handful of friends that I give all the credit in raising the boys. There were nurses here at times. What was absent was the free flowing conversation about Ivey - Talk about Ivey didn't come with a backdrop of sameness of friend groups, homework, or even the same carlines. Even when we clump together "special needs" - Ivey's medical needs tends to be a life of it's own. So even surrounded by a sea of friends, there have been somethings that I have done in solitude for twenty years. Rarely, and in some instances never have I sat in a sea of friends and heard - -Hey, Ivey needs to be suctioned - hand me the suction. It's lunchtime, I'll hook her up and turn on the pump. Here, I'll push the wheelchair. -- I understand why. I do. But that doesn't mean it makes it easier. The flip side of that coin is this, Ivey is loved, lots, and my many, but she still stirs a fear even in those closest to us. I see it on faces. I hear it in voices. I understand that too. My heart hurts. Ivey isn't someone who comforts others, she comes with a challenge. I see that challenge as a positive, because Ivey is a teacher - of a whole lot of things. I am her mom and often so much of that looks like a challenge. Ivey always has a challenge. Nothing is ever easy, or a typical milestone, or an invitation to stay overnight, take the trip, the snapchat conversation, a phone call, or be invited to the birthday party and sweet sixteens - and with all that came grief. Grieving for moms like me never ends. Ever. It is a unique grief. We grieve the living. Most often grief is associated with the lost.
{{It took a very special someone to tell me it is okay to grieve the life that could have been - and that no one should never ever be given space in my heart or head if they think, at any point, being the mother to someone with a complex disabilities is something you ever "get used to" or "get over". I am allowed to do the best I can with the trivial components and grieve whatever I need to grieve to survive. I am human, not superhuman. Because I love her, I will grieve her. Grief isn't something anyone is comfortable with - it is only something people envision moving past. For parents with a child with disabilities, no matter the age, grief comes merely in stages, it never leaves. }}
Somehow I just jumped ship to mention grief... but, along the way it has been easier to keep everyone on a perimeter. What is the balance to ask....
for help?
How do I ask for help with her ... without it being help, but rather time with her?
Time without fearing what will happen while with her.
Time where diapering, feedings, suctioning, and wheelchairs is normal for your family too.
Time where she can be with you and experience you, your home, your hobbies, your music.
Asking for help with her is extremely hard for many many unexplainable reasons.
Asking for help exposes a little grief and it just hurts so much -
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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