Jodie Pine

@jodiepine2 | contributor
I am a special needs mom who is continually grateful for all that my children have taught me about wonder, courage, grace, and what is most important in life.
Jodie Pine

Lessons Learned About Parceling Out My Plate Since Becoming Caregiver

I meet you as we’re waiting in line for lunch at the hospital cafeteria. We’re both a bit bleary-eyed from successive nights of tossing and turning on the sofa beds in our childrens’ hospital rooms. You ask if I want to join you at a quiet table near the window, with a perspective (although limited) of the outside world. As we slide into the stiff plastic chairs and manage to fit both of our trays on the compact table, you say, “ You’ve got a lot on your plate.” I smile because I know you’re not referring to the food I’m about to consume. “ You too, ” I respond knowingly, because having a full plate comes without question to the role of being a caregiver. “ How are you managing? ” I exhale deeply as my tense shoulders relax and I give thanks for you, my new friend, who has seen me and cares about how I’m doing. I stir two packets of sugar into my iced tea and take a long sip before I begin so I can collect my thoughts. “ Stumbling through these past two months has taught me a few things about parceling out my plate, and I’m clearly doing better in some areas than others. ” You nod as I go on. I’ve learned that sometimes I can say “no” to what gets added to my plate. After my son’s admittance from the ER to the ICU in January, I decided, when I caught glimpses of news headlines, that I just couldn’t take on i mpeachment or Iran. News-worthy events that I would have followed under normal circumstances I could pretty easily choose to keep off my plate. When a loved one shared concerns with me about our family’s future, it hit closer to home than the news, but in a similar way I made the decision not to internalize those worries. I could hear them and even acknowledge them without taking them on myself. I certainly didn’t need any more reasons to stay awake at night. I’ve learned that sometimes I have to take on my plate what I would rather not. Our son who was not hospitalized dealt with some medical issues himself: stomach pains, bloody noses, fever plus cough. Each time an issue emerged, I told myself I really didn’t want to take on anything that felt “extra.” But his needs required attention that I wasn’t able to take off my plate. In an effort to pay better attention to that son’s emotional needs and not wanting him to experience the Forgotten Child Syndrome, I contacted his school guidance counselor to let her know what was going on with our family. I also found a counselor through our church for him to have the opportunity to process the complex issues of his life. I’ve learned that I need to regularly touch base with my husband on the status of our plates. As a parenting team, we are trying to juggle physical therapy,occupational therapy, speech therapy, music therapy, doctorappointments, overnight hospital stays, and home-bound tutoring, as well as our other son’s school activities. But we don’t want our conversations to only be about scheduling, insurance paperwork, blood count numbers, or medications. We need to intentionally take breaks from the Cancer Center our lives have been revolving around. While my husband and I are journeying through our son’s cancer together, we’re different people with unique roles in life, so our plates are not the same. Finding out what each other needs to let go of and what we each need more of is crucial to “sharing the load,” as our default reaction to the added stress in our lives would be to find fault with each other. Carving out time to listen to each other’s hearts and to ask “ What do you need right now? ” is an area we’re currently working on. I’ve learned the importance of answering the question, “What do you need on your plate?” It’s important to identify what brings life and what drains it. In order to make my life as a caregiver sustainable for the long-haul, I need to be sure my life-giving activities outweigh my life-draining ones. Topping my introverted list of what fills me up are reading, writing, taking walks, meeting with friends and family face-to-face or over the phone, spiritual direction, dates with my husband, and connecting with a soul care mentor who has been through cancer. I also just made an appointment today to see a counselor next week. Sometimes people ask the general question, “ What can I do? ” and sometimes they offer practical suggestions. One of our most helpful offers was my mom flying out to support our family during our son’s first round of chemo. Because she and my husband handled both the hospital and our home together, I was able to attend a four day retreat as part of my two year Soul Care Institute program. Thinking through the specifics (meals, rides, childcare, etc) that will enable us to get more of what we need on our plates, will allow others to help us thrive and not just survive as caregivers. Now that you’ve finished your lunch, I’m interested in hearing your story (I pick up my turkey sandwich and ask how you’re managing). What have you learned about parceling out your plate these days?

Jodie Pine

5 Things I Didn't Expect From My Son's Empty ICU Room

A drive to the emergency room down the street from us filled with uncertainty of finding any answers about our son’s worsening condition, quickly morphed into the unexpected discovery that his brain scans were “very abnormal.” He was admitted to the intensive care unit (ICU) a few hours later, with brain surgery scheduled first thing in the morning. The surgical placement of an external shunt for hydrocephalus was designed to reduce pressure in his brain, which would hopefully bring about an improvement of his symptoms. But an extended episode of unresponsiveness later that day was alarming, and the neurosurgeon ordered another CT brain scan for 5:00 the nextmorning. When the doctor appeared in our room before 7:00 a.m., I knew in my gut it wasn’t good news. He showed us on the screen the large hematoma that had formed in the left forehead area. He wasn’t sure what had caused it, but it needed to be removed right away. Nothing about Daniel’s case was “straightforward,” he commented as he strode off for the operating room, and within 30 minutes the transport team was wheeling our son down to emergency surgery. We whispered goodbye and assured Daniel he was going to do great, but as the double doors of the operating room closed behind him the reality of uncertainty hit. And the tears fell. Back on the couch-bed in his empty ICU room. Here’s what I didn’t expect to feel, but did: 1. I didn’t expect to feel the quietness so deeply. The regular beeping — and occasional warning alarms — of his monitors had become the rhythm of the room, keeping track of all his vitals, bringing the nurses in to check on him and make adjustments as needed. Now the beeps were distant, coming from adjacent rooms, with nurses passing by his open door on their way to attend to other needs. Our precious 14-year-old son, the pediatric patient of room 5028, was no longer here. 2. I didn’t expect to imagine life without him. As the eerie quietness of the room and resulting seriousness of his situation sunk into my bones, I knew that our future with him was not guaranteed. This empty room seemed to symbolize how quiet life would be without him, and I grieved the thought of possibly saying a permanent goodbye to him long before we were ready. His life added so much to mine, and I couldn’t imagine what life would be like if his was taken away. 3. I didn’t expect to question if we had made the right decisions. All along, we had thought his recent regressions had been linked to complications with spina bifida. What if we had thought to ask for a brain CT scan earlier? What if any of the medical visits over the past six weeks had prompted someone to check into brain abnormalities, instead of just considering tethered cord issues with his neurological symptoms? I realized in the quietness of my soul that those guilt/blame-producing questions needed to be put to rest. Dwelling on them and traveling down the path of second-guessing would not be helpful, and I could make the choice to dwell on better thoughts. 4. I didn’t expect to feel surrounded by the prayers of others. Knowing that our Caring Bridge posts could reach people immediately, I was comforted by the prayers I knew were being lifted all across the globe while Daniel was on the operating table. Even though we were alone at this moment in the ICU room, we weren’t alone in bigger scheme of the medical crisis because of those who had committed to coming alongside us in our time of need. 5. I didn’t expect to experience peace about the doctor being baffled. Our stop by the Ronald McDonald House for a bit of breakfast after leaving the operating room, and before returning to the hospital room, brought an unexpected encounter with a dad in the kitchen. After sharing our stories with each other, he asked if he could pray for us and for our son. So as the three of us gathered together, holding hands beside the counter with his half-cut pineapple on the cutting board, my husband and I experienced a stranger reminding us who was really in control. The doctor might have no idea what was going on with Daniel’s brain, but God did. And we could put our trust in him. Now, back in the empty ICU room, that reminder of God’s sovereignty filled me with renewed faith. Daniel ended up going through a third surgery, two days after the emergency one, to place an internal shunt and to biopsy the abnormal tissue. His diagnosis turned out to be Central nervous system germinoma; difficult to determine from early scans because of its unusual location in the brain. Oncology was able to schedule him for his first round of chemo right away, and this week we’re handling post-chemo side effects. Having entered a new world called cancer, we have lots to learn from those who have journeyed before us. One of my biggest takeaways so far is how courageous my son is. As he’s napping on the couch now, I’m remembering his empty ICU room and reflecting on being in the middle of a medical mystery. Some of the uncertainty then now has answers, but we’re continuing to hold the tension of the still uncertain.

Jodie Pine

Missing Holidays With Family Due to Spina Bifida Complications

“I believe you. You don’t have to prove that he’s too sick to come.” My sister filled in the gap between what she now understood and what she still did not know, as I took a deep breath in the middle of detailing the symptoms our son with spina bifida had developed over the past five weeks, leading us to cancel our travel plans. We wouldn’t be with extended family for Christmas. My sister’s life-giving words pierced through my suffocating cloud of heaviness; like a beam of sunshine they lifted my self-imposed guilt of bringing disappointment to everyone’s plans. I exhaled with exhausted gratitude as she acknowledged the pressure I was carrying into this dreaded conversation. Because she listened, validated and believed, I no longer needed to sufficiently explain what long-distance family members hadn’t seen with their own eyes. She had heard enough to believe me and to share our sadness at this unfortunate but necessary decision. My husband and I decided to stay home with our son, while our older kids are still making the cross-country drive. It won’t be a “normal” Christmas for us this year, with big family celebrations and traditions. But we can still choose to look for the silver lining. Our immediate family’s life has closed in and centered around a new normal these past five weeks: leaving messages for doctors, scheduling, canceling, caregiving, praying and watching our son’s health decline. We have been sliding with him down a dark tunnel, with de-tethering surgery blinking hope in the future but with no guarantee of improvement, and the possibility of added complications as well. We pulled him out of school for the past two weeks because it had become too much for him, which has meant trying to do what we can for him at home and meetings with his (thankfully supportive) teachers to decide what the best scenario for him might be in the new year. What the new year holds. Plain and simple. We. just. don’t. know. It’s all one big question mark whether these recent regressions will be permanent and stable, will continue to get worse, or will be a brief window of setbacks he will somehow bounce back from. It doesn’t even need to be said, but it’s been hard. And in this season of being more needy than normal, we are incredibly grateful for the support of our family and friends. One of the greatest gifts we’ve received this Christmas is the one that says to us: “You are heard. We believe you when you say you are not able to come. You do not have to prove to anyone the level of sickness. And we don’t want you to feel like you are letting us down. We are standing with you, cheering for you in these trials, and holding you in our hearts. You are the gift, whether you’re here in body or with us in spirit.” Merry Christmas.