Monthly Archives: October 2013

Strength

Standard

Bennie's eyes

To share your weakness is to make yourself vulnerable; to make yourself vulnerable is to show your strength. –Criss Jami

Over and over again as Sean and I have been on this journey, we have been told, “You are so strong” or “We are amazed at your strength” or “The strength of your faith is so amazing” or “You have inspired me”, etc. I am not writing this to brag about it. In fact, I am writing it to say that, unequivocally, the very LAST thing I have felt in the last 2 months is strong. To be blunt, I have felt the very opposite of that…I have felt overwhelmed, defeated, scared, crazy, lost, trampled, heartbroken, angry, and tremendously sad. Sometimes, all of those things at once. I have also felt exposed, like the most private pieces of me have been ripped out and put on public display and I can’t stop people from seeing them, from seeing my grief, from seeing my insanity. Now, some of this is self-induced because we have chosen to write about our daily life and our struggles to make sense of it. We both have very public jobs and must face the inevitable person who hasn’t heard the news and says, “Oh, congratulations! You look great! How’s the little guy?” And there is no good way to handle that…because you feel terrible and they feel terrible and it’s like one big sad party that no one wants to be at. In those moments, I feel the weakest. Because, I have to figure out how to say, “Well, Benton died but thanks for the balloon” in a way that does not sound sarcastic or hurtful.

I had the privilege today to spend hours talking to another mother who lost her daughter 8 years ago. In that time, which was so amazing because I didn’t have to explain anything to her, we talked about how much you, as the grieving parent, WANT to say those things. Or to just look at them and walk away. And then you think, “Wait, no, that is not polite I have to be polite”…which is what society expects of us…or perhaps what we expect of ourselves. Instead, I have to remind myself that just because this sad thing happened to me and shifted my world view upside down and it is all I think about, everyone else didn’t go through it…the world went on without us and now it’s our turn to catch up…and we don’t always want to. And then the looks…oh the looks…pity, I suppose it is…or sympathy…which look so much alike it’s hard to know which one you’re getting. I feel, sometimes, rather like Hester Prinn, with my scarlet letters “dead baby” emblazoned across my chest Uf. That’s a tough one to get used to. Because I don’t WANT people to know me for that reason. I don’t WANT to be that person. And sometimes, I get that look and I just want to hit something, or someone…or throw something…or cry. Which, by the way, makes people REALLY uncomfortable, myself included. This is my weakness, this is my vulnerability…I am human

Online today, I came across the quote above…that showing your vulnerability makes you strong. So, in that case, I guess perhaps Sean and I are the strongest people I know…because we are a mess. Sean, it seems to me, is much stronger than I…he has been the very best support I could ask for…he says the right things, he gives me comfort, he tells me it’s OK to be sad, it’s OK to not be OK…he protects me, or we perhaps we protect each other. He is my safety and my strength, for certain, even when I know he doesn’t feel any stronger than I do. Our faith has definitely helped…knowing that there is a bigger plan, that we can give our sorrows up to something greater, that Bennie is safe and healthy and beautiful in heaven…these are all positives that have bolstered our waning spirits. Our family and friends have, overall, been great supporters as well. And, as I have written before, sometimes people we barely knew before have buoyed us in ways they can never know by simply showing up. So, really, I think if we are “strong” or have inspired people to be more present, that is not coming from us. We hope our story can help…we hope telling it makes us more able to cope, more able to find our way back to life…we know it will help us and if it helps someone else, great, but that is not the purpose. Bennie’s light shines on and that little dude was the strongest person I have ever met. He, with 4 chest tubes and 2 ventilators and 5 IVs and a feeding tube, was ALWAYS present. He looked right through you with his big eyes and you had NO choice but to love him and NO choice to feel sorry for yourself. Just none. Because, if he can be a sweet, cooing, joyful, beautiful person while dealing with all of that, what can we EVER complain about? Nothing. Not a damn thing. It is WE who were and continue to be inspired by HIS strength and HIS spirit. Any strength that we show comes from him. We are vulnerable and sad and lonely and don’t really know what will come next. But, we know that BECAUSE he was strong, we will be. That, I think, is what people must be seeing when they tell us we are strong. They are seeing him. And isn’t he beautiful?

And we all shine on, like the moon, and the stars, and the sun…and we all shine on…everyone.” –John Lennon

Advertisements

Dreams

Standard

If I had a single flower for every time I think about you, I could walk forever in my garden. ~Claudia Ghandi

During our time in the hospital after we found out that Bennie wasn’t going to get better, Sean would often sleep and dream of him…his growing up, the angels that were waiting for him and with him…and I was always a little jealous of these dreams. I slept and, I suppose from sheer exhaustion, never dreamed a bit. At least not that I remembered. Since being home, Sean’s dreams have continued. And I go to bed every night and wish- hope- that Bennie will visit me. It hasn’t happened. Until last night…or early this morning. I was in that moment between sleep and first waking and I could literally feel the weight of him on my chest…feel the depth of his breath, unencumbered by machines, feel the squirm of his little body, the warmth of him. It was awesome. And then, I heard him cry, clear and crisp. It was so real that I sat up and put my feet on the floor and started to move toward his room. And I stood in the doorway and at that moment realized it wasn’t real. Which was heartbreaking, that wall of reality. But then, I thought, oh my, what a wonderful dream. A perfect dream. It has made my day start slowly…with my head full of thoughts of him. And that, really, is as good as any dream. I have looked through our pictures of him. And spent time remembering him. My cup runneth over. ❤

mom and bennie, fargo

Goodness and mercy

Standard

Family pic

One of the things about death is that, even though we think of it as an end, it really is the beginning…of a new reality, a new journey. Everything that was “normal” before somehow isn’t after. The obvious is that there was a person and now there isn’t…at least in physical form. There is a hole that can’t be filled, etc. etc. etc. That is the bit at the surface. It’s sad. And hard. And will forever change your understanding of the world. And life. That is the bit in the depths. Many people go through change in life…new jobs, new homes, new adventures of all kinds. Many people go through loss in life…of people, of jobs, or homes. It’s a cyclical thing. And, in thinking about it, each of those changes and losses makes us what we are on this day, in this moment. So, without them, we would be different. Sometimes, that is good. Sometimes, that is bad. But, there are moments, like now, that the obvious bad (loss of infant son) and the not as obvious good (generosity of people, encompassing love) mix together and kind of scramble. It’s tricky. And throws you off the usual cycle…and leaves your brain kind of jumbled. Because, all the good is a direct result of the one, giant bad thing. So, that means that you have to come to grips with the fact that this bad thing, this loss, this grief…has shown you the kindness in people’s hearts like nothing has before. Which is amazing in its own way. But, a challenge in another. The challenge is to keep the good in YOUR heart, YOUR life…it would be easy to just give up on happy…give up on good…give up on life. Become like a hermit…only leaving when the soap runs out and you can’t avoid the store any longer. That has crossed my mind. Pretty much every day. But, then I think I am failing Bennie doing that…because he lived SO hard and SO much in his short time. And really, it would be pretty weak of me to give up on my life because he couldn’t have a longer one. This is what I tell myself. To get up. To move. To do something…anything…which, for the most part, I’ve done…every day.

The hard part (or, one of many of the hard parts) to all of that is figuring out how to focus. That’s the other tricky bit…it seems that in the course of the last few months, I have completely lost my attention span. Honestly. I understand, kind of, where it went. For those 25 days of Bennie’s life, every bit of my energy and attention was focused- acutely- on him and his needs. Those needs were so variable and those fears and worries so immediate that the time or energy to focus on anything else was lost. The idea of “moment by moment” entered…and has not left. Now, this is not an all together bad thing. The idea of seizing the moment, living in the present…that is a valuable and worthy result of our loss. I work on keeping my mind there, engaged in whatever I am doing…it helps me to remember Bennie’s strength and fight. But, so very many of the things that I have always done make this new frame of mind a challenge. Reading, for example. I can’t do it…not for more than about 20 minutes. I lose interest or ability or something. Before Bennie, I literally could read for an entire day without stopping for anything but a little sustenance. I loved it. I reveled in it. I loved nothing better than a good book and some time. Now, it does not hold my attention. The same can be said for TV…Sean and I have always watched a lot of TV. Fall is about football weekends…Saturday college football, Sunday NFL. But neither of us can pay attention for a whole game…or really even for a whole quarter. Then, there are daily tasks…dishes, laundry, sweeping, cooking. I have yet to do any of those things from start to finish (besides cooking some grilled cheese sandwiches and some chili) since August. I start. And then, I get distracted by something else. Or I start thinking. Or I just decide I don’t care and it can wait until later. Which has, of course, led to a messy house and many unfinished tasks. The same goes for thank you cards…I started, with mom’s help…and the rest sit in a pile in my dining room, waiting. The gifts we received also sit, waiting. I am not sure what I think will trigger me to start them or put them away. No idea.

I also have thought, every day this week, “I should really stop by work and check in…see how things are going…do a few hours at a time to make it easier to go back full time soon…” and then, I always find a reason not to…I decide I don’t like my job anymore, or I don’t want to deal with yet another overwhelming task (being gone for 2 months will do that), or that I don’t want to be back in the public eye…all of which hold a kernel of truth, but none of which are really it. I really just don’t want to talk to people. Which is crazy. I LOVE talking to people. Or at least I did. But now, I think my issue is that somehow I, the one who is grieving, have to figure out a way to be “OK” so that everyone else doesn’t feel awkward. I know it’s “OK not to be OK” and I “have a right to my emotions and my grief” and should not let “society dictate my timeline”…see, I HAVE been reading my bereavement packets and pamphlets. However, all of that is easier said than done. And since I haven’t been able to figure out what my “new normal” is at home yet, how can I do it at work? Or on the city council? Or amongst my friends and acquaintances? Or my family? Those are big hard questions. And I have no answer for them.

It is avoidance, I know. And I also know that it is depression. And I have to just start and figure it out, moment by moment. Follow my own advice. Get out and move and do the best I can each day. Which I suppose I will do. And I know the happiness that once surrounded my life will return to a point. And I will work and I will find out what my “new normal” is…and in the meantime, I will embrace my new limited attention span and if you don’t get a thank you card until Christmas, it will just have to be OK. And if my house stays a little messy, that’s OK too. My grandma used to say, “No one will ever get to heaven and wish they had cleaned more.” That is really true. And if people who stop by care, oh well. Let them.

The day Bennie passed away my mom sat with us and placed her hand on his head and recited Psalm 23.

(A Psalm of David.) The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

I have heard this at innumerable funerals. And it has always been comforting. But, until that day I never really listened to it. Funny, isn’t it, how that happens? Things we’ve heard all our lives suddenly have new meaning. The valley of the shadow of death…I think I live there right now. And I think that’s OK. Because I know that it is not a scary place…it is a place of imagined fear that in fact we have created ourselves. And in fact, goodness and mercy do follow us, perhaps even more closely, during our time in this place. He restoreth my soul…my cup runneth over. Yep. Working on that. Hard. My cup runneth over. I love those words…because, it does. It really does. Even if I can only pay attention for a few minutes at a time. And even though I have created this fear of returning to the world, I suppose that I need to just get over it. Because, I created it…it doesn’t really exist. Goodness. And mercy. I have seen them. Every single day since Bennie was born. And every single day since he died. I will trudge through and live in the valley for a while longer I think. One day, I will remember that I am good. That my life is good. It will come. I just have to step back into the world and trust that it follows me. ❤

Socks and pennies

Standard

So today, I decided my “one small thing” that I could step forward on was laundry. Woo-hoo…super exciting, right?! But, it seemed a manageable task. A dear friend of ours did a mountain of laundry for us when we were with Bennie in the hospital. This mountain had accumulated over the late summer and early fall…things like blankets, coats, baseball gear…all the “stuff” you have to deal with as the seasons change. Part of this pile of clean things was also the last load of “prep” laundry I had done before going into labor. I’d spent a good part of the last week of August washing things for Bennie…clothes, burp clothes, towels, and such…new and hand-me-down that would be ready and waiting for him when he got home. This last load was bedding- sheets, blankets, etc. So, I got the new load started and with Sean’s help hauled the four baskets of clean things upstairs and started to put them away. I stacked Bennie’s things in his crib, because for now that’s what I can handle and that is another step in this journey that I can’t deal with quite yet. Then, with the kitties “help” (read: they climbed all over the clean clothes and jumped in the dresser drawers to nap) I started finding homes for things. I sorted into piles…t-shirts, pants, sweatshirts, towels…and about two-thirds of the way through, as I was throwing things into a basket to fold or hang, one tiny white sock fell onto the floor. Now, this little sock obviously did not have a mate because I had put them all in the dresser in Bennie’s room 8 weeks ago. I don’t know where it came from or why it was there. But, without a moments hesitation, I was back in the NICU, holding my son as he died. It’s like post-traumatic stress, I think, in many ways. The smallest thing can trigger it and it’s like time stands still and you can’t move and you can’t breathe. I could smell the room, I could see every detail, I could feel the weight of Bennie in my arms, I could hear the music that was playing and remember how quiet it seemed after 25 days of machinery and noise. This moment, every tiny detail of it, will never be gone. And I am grateful for that. Because, even in the overwhelming sorrow, there was beauty. I have never felt more connected…to Sean, to Bennie, to the angels that carried his soul away, to God. Life, and its limits and the beauty that comes after, was amplified. I cherish that moment. It made it easier, when he was gone, to bring him to Kim (our nurse) and let her care for his little body. Because, I knew he was somewhere better. She was so gracious…every one of those nurses, I truly believe, is an angel here on earth.

Anyhow, I don’t know how much time I spent, standing in my bedroom, holding that tiny sock and remembering. But I do know that I wept. And by the time I “came back” from my memory, I was smiling. Because, it felt like I had been with Bennie. And really, that makes me so happy. I posted about this experience on Facebook and a dear friend called it a surprise hello that happens when we need it most. So, I guess I needed that today. I really did.

I went back to my task and as I did I collected all the loose change that laundry day can bring. I haven’t really cleaned our room or the laundry room in quite some time so over the course of the afternoon I gathered a big pocket full. It made me think of our niece, who is 3. She is always searching for loose change to fill her “owl” bank at home. She is vigilant about it…she comes to greet you in the car and checks by your seat. She searches around the house, looking in the cushions and on the floors and tables. She loves pockets because she can put her pennies and dimes and nickels in them…and takes the change out to show you on at a regular interval. It’s really stinkin’ cute. One day, she and her mom were on a Target run and they were looking for banks for Bennie. She was, according to my sister, quite insistent that the purple sparkly pig (her favorite color is purple) was the perfect one. But, with some convincing, she was persuaded to get one in the shape of a baseball glove, holding a baseball, because “Uncle Sean likes ALL the sports, Auntie, but baseball the best!”. She was VERY excited to give it to me and I told her she would be in charge of teaching her cousin how to use it. This sweet little bank has been sitting on a table in Bennie’s room, waiting for the day she could start helping him fill it. And, suddenly, I thought well, since he can’t do it, I will. And I found the bank and brought it downstairs, and slowly but surely emptied my pockets of pennies and dimes and nickels and quarters. And I took the bowl of change that we had on the counter and the bag of change I had on the dresser and added that to the mix. And I will tell our niece about Bennie’s bank and we can fill it together. And then, when it is full, we’ll cash it in. And do something nice for someone, she and I, together. And we’ll start again. She will probably not understand it for a while. But that’s OK. It’s the idea…of keeping his memory alive for her…of keeping his memory alive for me…and of carrying on the good, the beauty of his short time on earth. I’m really, really glad he stopped by to say hi today. Really glad.

Generosity and gratitude

Standard

081

Generosity is an amazing thing. Particularly when it is sincere and without underlying purpose other than to give. I have always been a person who loves to give…I love birthdays and holidays and sometimes Tuesdays…because it is the unexpected gift that makes me feel the best. I like to give things that are small but make people smile…like a cup of coffee or a funny card or a few flowers. These are the things that make me smile because you know that the person giving them is being spontaneous and thought of you. I love that.

So, now we have become recipients of those beautiful gifts. We have gotten everything, from big to small. Large scale monetary donations from student groups and dear friends and complete strangers. Small scale monetary donations from people we grew up with, long ago acquaintances, and new friends. Cards and messages from all parts of the country. Beautiful plants that fill our house with life…that I will try, with my well established black thumb (ha!) to keep going. Hand knit prayer scarves, lovely books, cozy blankets, soft stuffed animals to cuddle, delicious food so we can feed our bodies while trying to mend our spirits. Offers of drawings and painting of our dear little one from the creative people we are blessed to know. Beautiful silver necklaces with Bennie’s little finger print in them that we can wear and remember him. The most amazing, genuine, sincere letters, often from people we barely know or are just getting to know, telling us that Bennie’s journey affected them in a positive way or helped them realize something about their own life.

We’ve also been blessed with the gift of time and oh what a gift that is. Sometimes, the simplest thing can mean the most…just showing up. Sean’s co-workers came over and helped with yardwork and a patio project. Our neighbors came over with food and stayed to visit. A beautiful person who lost a grandchild came with a candle on Pregnancy and Infant Loss rememberance day and gave us a candle and a hug and made us feel less alone. A dear friend took us out to dinner and asked us about Bennie and really, really listened and then proceeded to offer his time to help us with the foundation. Another friend spent hours with us talking about developing a website for that same foundation. And yet another offered his time and space at a regional brewery for fundraising. And still others cared for our cats and house and cleaned and changed locks and kept things going while we were away and continue to offer even though we are home. An enormous community of love and support are putting on a fundraiser for us to help us face the incredibly daunting medical bills that are left in the wake of Benton’s time in the hospital. My mother came and helped get the process of thank you cards going…we spent the entire day, and I am sure will spend many others. Our niece, who is 3, brought a pumpkin she grew to the cemetery so Bennie could have one for the fall. A pumpkin for a pumpkin from a pumpkin…awesome. Our local churches and area ministers and friends have offered up books and kind words and healing prayers beyond measure. We can literally and have literally been feeling them since Bennie’s birth, through his death, and into our period of mourning and grief. They lift us up and sustain us.

Without thought or question, all these beautiful people came. And gave of themselves in whatever way they were able and often much beyond what they were able. Without this tremendous outpouring of support, we could not and would not be upright and moving. I do not doubt that at all.

When working our way through the cards and memorials, I said to mom, “oh what I wouldn’t give to be able to send it all back”…and she said, “I know…but life, sometimes, has a larger plan. And isn’t it amazing how generous people are? All because they love you.” And really, I suppose, that is the greatest of Bennie’s gifts. We are all so much more beautiful in the light of love. His love, his strength, his fight…that made us understand what life is all about. And, in a way, this generosity of time, of material goods, of spirit…that reminds us everyday to be so grateful. It keeps Bennie’s spirit alive in all of us. And that, I think, is his gift to us. That all encompassing, boundary shattering, heart swelling love we are so lucky to feel from all of you. Oh how thankful we are and will continue to be. And we’ll keep it going. Forever and always.

Heart

Standard

34

KollwitzParents

I never thought much about how often we say in our society, “My heart is breaking” or “He/she broke my heart” or “I am heartbroken”. And really, I think there are so many levels of this emotion…but, I will say that no matter how I thought I understood the idea, I never ACTUALLY felt heartbroken until Benton died. Now, there is the obvious overwhelming emotional side…initially shock and numbness, then gut wrenching sorrow, then bouts of anger, then desperate loss…and so on and so forth. There is the literal physical side…aches and pains of all varieties, loss of appetite, lethargy. As a visual person, I often sit and think about what a broken heart looks like. My art history brain takes over and I think about pieces that have made me feel that sense of pain. Kathe Kollwitz’s work is always at the forefront…it is haunting and beautiful and pretty much describes exactly how I feel. I have always been drawn to her work but I think now, I understand it in a way I didn’t before. Kollwitz lost a child. And her images, I think, make sense to me because they are desperate and careful and beautiful in their grief. That sense of wanting to be safe and cocooned, of needing the support of the world but not knowing if you can handle it. I get that. In talking to a friend today, she stated that the world seems too harsh…everything is amplified in a way that it wasn’t before. This vulnerability, it seems, is the reality of grief and heartbreak. Everything seems stronger than you are…even the noise, the lights. They seem to overtake and overwhelm in a way that they didn’t before. It leaves you feeling helpless and easily hurt. And, the very few negative experiences that happen seem to stick in a way that the enormous number of positive ones don’t. Grief brings out some hard truths that we may not be ready to face. But, we must because they are there and honest in a way that we are not at other times in life. Those truths, it seems, can also add to our heartbreak because we have to face the fact that some people are not what we thought them to be…or that WE are not what we thought ourselves to be. That’s a tough one. Because, who wants to face their own limitations or the limitations of those around us? No one. However, this heart of mine, broken in my hands, makes me do that. It’s a process I didn’t expect for some reason. But, it’s needed in order to figure out where to go from here…

This weekend, we spent time in a beautiful city with friends and family that had reached out to us during this journey. We took the “live in the moment” mantra to heart, literally. We called, we showed up, we gave our time and attention. And in return, we were filled up with love. It is true that you get what you give…and even if we felt like curling up, the effort to BE….be present, be vulnerable, be social, be OUT…that effort made our hearts, a piece at a time, begin to heal a little. There were bittersweet moments, going to places we love and realizing that we will not get to bring our son there…that he will never see those places that helped to build us and find ourselves as we grew…those moments were hard. But, then Sean said, “he has seen them all…or better…where he is now”…which is true. And perhaps he was there with us.

I think, sometimes, that this new reality that is full of ups and downs and gentle steps forward and crushing steps back, this is going to be a tough road. And I am not sure where it will lead us. I think, sometimes, of Bennie’s strong strong heart…that beat and beat long after his lungs and his body should have let it so that we could cuddle him and hold him close…and the valves of that heart that are still working to help two other little ones…and I know that because of that heart and that strength I will eventually figure out a way to mend my heartbreak enough to rejoin life. My own heart, broken and weak now, will always hold a place for my son and all that he has taught me. And it will regain some strength. But, I think, it will always be changed and my perspective on life will never be the same. I guess, in some ways, that’s OK. I will, though, always wish I didn’t understand all of these things. That heartbreak is one that cannot be erased. For anyone involved. But, somewhere in that heartbreak is something good…and I will work through it…until I find it. For Bennie’s memory…to keep those things he taught us at the forefront…so that our broken hearts can become the driving force of a new purpose that will never replace him but will, somehow, honor him. We’ll find it amongst the pieces. I know it.

“I want to cultivate the seed that was placed in me until the last small twig has grown.” –Kathe Kollwitz

Rain, inside and out

Standard

rain-water-falling

These past few days have been full of rain here in my little town. It’s been gray and dreary and even in a good frame of mind that makes it hard to get up and get moving. In my current frame of mind it makes it even harder. But, in spite of this yesterday was a good day overall. Doctors appointment, photo printing, lunch with mom and dad, some good laughs thanks to classic SNL…a bit of frustration in the evening…a walk in the rain to ease away some of the energy of that frustration…so, generally, good.

Today, same weather, different perspective. Still gray and dreary. Post op doctors appointment, which meant we talked a lot about Bennie…but instead of “how’s he doing? is he eating well? growing?”….” it was, “here are some therapy options…we’re so sorry…depression is expected…we’re here for you…” Then, on to a meeting with a dear friend who is helping us get the website for Benton’s Hope, our foundation in honor of Bennie, up and running. Lots of good talk, great ideas, etc. Then, lunch. Where, it seems, my meltdown caught up to me. In a local sports bar. Where I took it out on Sean as frustration and in the bathroom as tears. Which was neither appropriate or productive. But, that’s a trick of grief…we take it out on those closest to us. And they do the same. And that is “normal” and “expected” but still sucks.

When we got home, there was a small flood in our basement from all the rain, so we spent (and will spend again) an hour or so dealing with that. And, while manning the shop vac, I caught myself thinking, “Rain, inside and out. My house and I seem to be on the same page.” Because, really what I was feeling at lunch and continue to feel now is a deep sense of loss…but this time a “I think I have lost myself so completely that I will never find my way back” kind of loss. And it scared the crap out of me. C.S. Lewis wrote, “No one ever told me that grief felt so like fear.” True. So very true.

I have spent my life working toward the things that make you happy. A good job, a comfortable home, a loving partner. And, overall, I have achieved each of those things through a whole lot of hard work. My purpose, it seems, was to work on preserving history and sharing it with others. And I was content with that. And then, I got pregnant. And all the things I had spent so much time focusing on seemed a little less important. Suddenly, my purpose was being as healthy as I could be so that our son could be as healthy as he could be. And I was ok with that. It felt good to loosen my grip on my career a bit. It felt right.

Then, Bennie was born and my purpose shifted again to getting him help and being his advocate and then grasping desperately at the time we had to make memories before he was gone. And then, caring for his body and our broken hearts.

Now, the foundation seems a good focus. But, when working on it I find it hard to see the good for the simple fact that very reason it exists is because Bennie doesn’t. And that brings so much sorrow to the surface that I feel like I am drowning in it. So, what will my purpose be? And how will I find my way through? Today, I just don’t see it. I see rain. And sadness. And hurt. And no direction. And enormous, heart wrenching, overwhelming loss, both of a literal physical body and a figurative emotional one. I am lost, in every way I can be. And mostly, I am just really very sad.