Food is love. And real love is what we are most hungry for. Good food is like real love, it nourishes your soul and brings comfort few things bring. In a world of twinkies and cheez whiz sometimes you need a chunk of smoked gouda and a warm baguette. A tall glass of fresh squeezed orange juice in a world of concentrates that have been frozen for years.
I’ve become a depth seeker. I want people of substance in my life.
In the past two weeks I’ve gotten to taste love and emotional connection time after time. It has been a season of intense hardship with Oliver and life altering decisions about his care. It has felt like too much at almost every moment.
A few days after we returned from our adults-only vacation I walked in and saw a pile of stained shorts and the look on John's face, and knew it was time. John is one of our fantastic nurses and he is more patient than virtually anyone else we know, but he had hit a wall. The diaper changes, the stripping and smearing, the biting and scratching had taken its toll. Aggressive outbursts and frenetic activity wear out even the most loving of parents and caregivers.
|John and Ollie at Special Olympics this year|
Oliver is 7. He is in second grade. He hasn't even lost all of his teeth yet and we are trying to figure out how we can provide a 2-1 ratio for his care, 24/7 in our home. We are trying to find money trees that don't exist and convince ourselves this next level of care is sustainable. We are even beginning to consider out of home placement where a team of specialists can help him.
This is not the first time we have had to consider new levels of care, but two adults for every single waking hour is a new precedent. We thought this may happen when he was much older; a preteen with urges that do not match his cognitive awareness. A raging teenager who can’t control his impulses...but a second grader? It feels unnatural to be the parent of the child and somehow, despite doing extraordinary things, not be able to meet your child’s needs.
I have been bringing my makeup to work, so I can remake my face after I have fallen apart in the car. I’ve taken to hiding in my office with my face to the window, back to the door. I prefer my tears to fall in private. I have stopped putting mascara on my bottom lashes all together, because the tears are always at the ready in this season. The real mess in all of this isn’t my face-- it is my heart.
So we have been scrambling to have two adults for Oliver's care when he is not in school. Andrew is working out of town most of the time, adding on additional strain to this new level of care. Mind you, we already have 43 hours a week of nursing care and it is not nearly enough. We have been on a hiring frenzy trying to identify people who can help us find a kind of stability at our house again. We have now added 20-30 hours of care from people we are paying out of pocket and 5-10 more from family. 80+ hours of care a week for one deeply loved little boy. Astounding. This is extreme parenting. Wartime parenting.
A special needs expert who has followed Oliver for years said to me last week on the phone, "In my professional opinion Oliver is one of the highest need kids in this state." It took my breath away to hear her say that. Part of me wanted to weep and say "yes!, yes!" this is why we are struggling so much, but the other part of me felt my heart break into little pieces. Validation sometimes comes at a high cost.
So these past few weeks I have been incredibly thankful for real love, real food, real depth. People who have cared for us while we are trying to simply hold it together.
Where did I find comfort in the midst of this crisis?
I am sitting in a classy conference room in Cary, NC enjoying the most delicious turkey sandwich I have ever eaten. It is on perfectly crisp toast and the homemade potato chips are just the perfect amount of salty. The sandwich is so good, so timely, so thoughtful I get a little lump in my throat. I know I can’t start crying, I have to lead an afternoon of presentations for a group of people that I have never met. But with each bite I feel the thoughtfulness of the giver, a mentor and friend. Norman anticipated this small, but real need in my life. Leaving my company meeting to come to his meant I didn’t have time for lunch. I had scarcely thought about it before he was on the phone, reading out a menu and ready to have whatever I wanted waiting for me. It was such a small thing, but it meant so much in the midst of the craziness with my personal life.
That evening, after my presentations, I met with another mentor and friend at one of my favorite spots in this state, The Umstead. The weather had a tiny hint of fall crispness as we sat outside overlooking the lake and enjoying a glass of wine. I spilled out all my questions and worries. My heart was so heavy. She asked about my afternoon of presentations and when I told her about the turkey sandwich my eyes filled with tears instantly. I don’t cry that often, I can be rather stoic and yet a turkey sandwich (of all things) had me falling to pieces. What is really sweet is that she instantly understood my emotion for two reasons: First, she is the CEO of a 60 person company so she understands the high cost of leadership and second, she has been graciously kicking cancer’s aggressive ass for the past year.
|Natalie & I at The Umstead|
Fast forward one week and it is time for my wine and whine group to gather. This is tiny group of mamas with very special children. Your kid has to be “special enough” to join our little club, as in at least 4 diagnoses and an IEP the size of a Harry Potter book. Sometimes you just need to find hardship-peers.
Somehow our newest member to wine and whine finds the time to bring in a cheese tray that looks like it was ripped off the cover of Gourmet magazine. There are all kinds of fancy cheeses, jellies, fruit, compotes and tiny little toasts. And much like the turkey sandwich it looked like love to me. The wine glasses were filled as we all leaned back in our chairs. The four of us around that kitchen table began to howl with laughter at the craziness of our lives. The brie was so creamy and soft, gently balanced on that tiny little toast and with every bite I felt the love she had put into that tray. I said, “this is the nicest thing anyone has brought my way all week.” It felt so decadent, so thoughtful, so perfect for the moment. No cheez whiz allowed.
And up until that moment it was true, that that gorgeous tray of goodness was the nicest thing anyone had done all week for me. But on Friday I got another surprise. My co-workers called me to see an unexpected delivery; In two large bags were tons of delicious sandwiches, many of which were turkey. My friend, Natalie, whom I had met at The Umstead a week earlier had sent them with a note that said:
“To Stephanie and her staff,
Sometimes a turkey sandwich can really mean so much.
Hope this makes you feel good today!
Lots of Love,
100% I cried and dang it, I had mascara on my bottom lashes. That is next level thoughtfulness. Extreme thoughtfulness. Love in action.
Where will I find comfort in the coming weeks...
I’ll find it in a bite of the perfect turkey sandwich, in the creamiest brie on a piece of tiny toast, in a glass of Cabernet on a crisp afternoon, in the warmth of Chicken Parmesan delivered unexpectedly. In all these places the food was simply the physical manifestation of the warm glow of friendship, sincere affection and real love.
When our friends are hurting we want to make sweeping gestures, we want to ease their burden and I want to suggest that you can do that more easily by thinking small and then taking action.
A playlist. A book. A simple flower arrangement. A warm meal. A cup of coffee. A funny card. A turkey sandwich. A promise to follow-up and then really doing it. A gift card. A lunch date at your favorite spot.
It is true that tiny toast and brie can really help heal the hurt. It is true that someone who shows up to listen, not to give advice, can help you breath easier and leave feeling lighter.
Burdens are halved and joys are doubled when you spend time with people of substance. People who know the difference between cheez whiz and real food.