Raw edges

Every day, these days, I wake up in a place that is not mine with people above me, below me and to the sides, use a kitchen that is that mine, shared with several other families, then walk out a door with a front desk, down a public street and into a large hospital. I greet people I saw every day for one week and then see only sporadically. I see nurses to whom I connected emotionally during difficult times. I am cordial when down, friendly and funny when up. I am an extrovert. I love conversations with residents and meeting some of the nerdier department doctors such as Infectious Disease and Immunology. I meet new people every day. The game is to remember their names for recall, guess where they come from when they walk in the door, and to learn a new medical words I cannot spell every day.

I am vulnerable with Dr. P and one nurse, in particular. I would like to be friends with two residents and two nurses I have seen over time. My relationship with P is an odd one, because she had all my trust and vulnerability in the early days with Peter. Now I just do not feel as vulnerable. It is a joy to see her, I guess, like a friend. She still has all my trust.

I have found, when family comes, I become very reactive. I snap easily. I drove home, partially in tears and in a rage at the traffic. It was clear most of the way, but boy of boy, when it was not…

I came home and in this bizarre rage straightened the house. Not in the tornado I some times experience when I feel overwhelmed at how much there is to do. It was with this strange anger. Am I angry at life? Am I angry I am not home to care for it myself? What is going on?

My mind began to clear after another hour. I lay in bed thinking irritably about whoever it is who is hand washing and leaving out their dishes to dry at Family House (the policy is to put all dishes in the dishwasher so they get sanitized, and to empty the dishwasher whenever it is full). I fantasized about putting out a note that read “You forgot your maid at home…put your dishes away” etc.

That I should lay in my beautiful bed in my beautiful home and think with ire about Family House…now I have meat for reflection. I got up, stretched and got a snack (cover my bases to cool my mood).

It is as if all my raw edges have been turned inside out.

Being free and comfortable with someone does not give one license to be a jerk. Yet, in all the turmoil, I have experienced a profound lack of freedom because I am constantly with strangers. On the stressful days of this past week I was so grateful to see AC in order to joke about Peter in our snarky way, something I only do with my husband and P. It is a special humor that understands the love you feel when you say mean things about an adorable baby because babies make life hard. Know its a joke when its hyperbole.

With family, I find myself filterless and out of practice with momentarily holding back a reaction. I am choleric and so when it comes, it comes fast and strong, and very unfortunately, biting. I once was, shall we say, not bad at holding my tongue and considering my response carefully and speaking with love. It catches me off guard. I act like a child. I fight. I rage.

I suspect it only wants some practice. And although I do not excuse a lack of charity, I think perhaps, it is a sign of something good and deep. My husband know a favorite movie image of mind is when the woman is hysterical with anger. The man who loves her puts his arms around her, restraining her in an embrace. She hits and fights to push him a way and he holds her closer. She succumbs to this love and begins to weep. While my husband does not literally hold me in my fits, it is an illustration of the dynamic. He waits for the tempest to pass. And then I succumb to tears. And he is there.

My husband and my mother are the only ones I have ever yelled at. I think I might be the only person my mom has fought with. This is because there is no one who knows me better, with whom I am more free, or who I love more.

I do not feel angry about life or our situation (at least not right now) but somehow I suspect, it is okay to get a little more than miffed, if only to let it breathe. I am just glad everyone else was asleep!

Morning Reflection: For the sake of Christ, then, I am content with weaknesses…and calamities; for when I am weak, then I am strong.

“Three times I besought the Lord about this, that it should leave me; but he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” I will all the more gladly boast of my weaknesses, that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities; for when I am weak, then I am strong.” (Corinthians 12:8-10)

My high school youth minister told us, that as God is a Father, he knows his children very very well. My youth minister could put roast chicken and macaroni & cheese in front of his young son and know he will pick the chicken because he hates macaroni & cheese. Just because he knew this when he gave the option did not mean he chose for his son. So it is with God the Father.

In my house, we are very tricky parents. Perhaps I would prefer the kids not to have dessert. We frequently require them to finish particular parts of their meal (the protein) before eating the parts they love (the fruit). I could add an extra vegetable there and require them to eat the vegetable before they can have dessert. The eldest makes it through, as she fancies the taste of vegetables. The littler ones, with their sweet teeth, do not. I shape their actions.

So God knows us. So he knows me. Just when our finances get tight, friends make incredible offers of generosity. Maybe God inspired me to write or say the words that move them; maybe God used some external inspiration. Nevertheless, the timing is very helpful.

It is meant to be.

God made this good thing happen.

God so inspired and shaped the events precipitating the choice that here we are, with blessings we cannot fully comprehend.

So goes my life now, with the future veiled in mystery.

He says, “I can work wonders in you and it will draw others to me.”

I know a mother whose son has a genetic condition that greatly impacts her life. She radiates peace, and patience, and warmth, and compassion, and understanding. I think perhaps everyone who meets her stands in awe of her.

I know another mother whose son was born with a life-threatening condition; whose son underwent surgeries and difficulties; whose family underwent separation during his care. In her, I see boldness, courage and a tough trust in the Lord.

I see that I am different than before. There are worries in life that matter very little now. I feel this unspeakable strength. And yet, then there are those days, those dark days, those gone days, when I am reduced to ruin and helplessness. Mysteriously, we pick up again and keep going. And I feel increased gratitude, perspective, and compassion for myself for the times when I feel very, very weak. Gradually God reveals himself and enlightens my mind to the gravity of my son’s condition. If those chromosomes had come together any different, he would not have SPINT2, but he would also not be Peter.

“God meant for you to have this baby…God meant for you to have Peter,” Dr. P said to me.

If we are open to the challenges before us, and rather than cling to the life of security and comfort, throw ourselves into the will and wonder of God, he will do amazing things. He will work in us with his power in a way that feels so thrilling and incredible and painful. You would have to keep riding roller coasters without him to get such a thrill. That gets expensive. In the very smallest way, it is like how good it feels to trust a friend or a spouse, when you experience that moment of freedom and synchrony with the other person. Only this feels a little more like flying.

20160901_174651Other days it feels a little more like being dragged through the mud. Thus, I see the benefit of morning reflections: keeping perspective.

 

I am going home

I am going home. I, alone. Sadly, my infant son will stay. His father will come and they very much need the time without mom in the room distracting him. It has been too long since they lived together.

This morning I read “The spiritual practice of decorating a nursery,” and it strikes me. Yes, I remember the power of preparing the changing table baskets for Peter, unfolding the tiny onesies that my older son wore as an infant. They were awe-inspiring moments as they caused me to reflect, anticipate and pray for the baby who was to come. I do not remember heartache in those moments.

Yesterday, as I met with my counselor, we talked about imperfect perfect moments. I said the moments at home were perfect and then brought up how even in those days at home, those beautiful 5 days (the last was one of worry and the Emergency Department)…even in those beautiful five days, I worried. When I unpacked those onesies, I probably worried too.

When I arrive home, I apply my hand to our home. I gradually clean and organize. I am my husband’s motivation for doing his duty around the home, so there is a bit more that needs doing when I return. I do not mind, so long as there are no surprises!

And I redecorate. I either move furniture or paint a piece of furniture or hang a picture. I decide it will be autumn in August, and rightly so because now when I return it will be September. I have an unfinished project I want to finish this weekend. Just a final topcoat on a custom-mix painted dresser…in the nursery.

It is the nursery because there is a crib in there…because we do not allow the children to call it their own. That’s all. There is also an antique double bed that I love (Art Nouveau,so hard to find!). The older children take turns sleeping there based on what we think will make the “kids’ room” the quietest. The kids’ room is where I turn a blind eye. I ignore how messy it is. I have no expectations. I have made it almost entirely neutral with some references to sky and sea.

But the nursery…that is my playground. A coral wall, deep orange curtains with a modern white floral motif. Reclaimed wood painted coral cut and hung as arrows. The Scream. The antique bed. A light blue chalk painted desk fixed up from the side of the road. Loud, palm, Miami inspired bedding. It is not pale blues and pinks to reference the gender of our children. It is my space, the room where we do not allow toys, where I do not keep my husband’s taste in mind for decorating (yet, he likes it).

Every room we touch can be an act of love. I work to make this room and that room beautiful for my family to enjoy. I put my heart into my home. It is my art. And what a welcome we receive when going home.

I do not want to look back at yesterday. Yesterday was a bundle of anxiety and last night—a bundle of restless legs and my body rejecting the mattress and therefore little sleep. But tomorrow…tomorrow…I go home. Only for two nights, but does it matter? No, it does not!

From yesterday evening: “I’se still climbin'”

The SPINT2 mutation is a autosomal-recessive mutation. While our children had a high risk of having it, only Peter has it. That Kyle and I should find each other, both with this recessive gene mutation, was statistically unlikely. And here we are. I read today online that there is a high-risk of mortality. I guess I knew that without putting the words to it. Other infants have died. But not Peter. No, not my Peter who was saved. Because of his cleft (and many cases did not have clefts) we were already connected to UCSF. It is a strange feeling to feel that someone saved your child. My heart is open to them with this immense gratitude, especially one particular woman who I was on the phone with every week until she re-routed us from an ophthalmology appointment to the ER. There it all started.

I wanted to write the experience for so long. It felt surreal. How could I be in the ER with my child? How could things be this bad? But things were that bad, and I knew it. Two months and below birth weight.

Walking into the Pediatric ICU, I fell apart. It was like the movies. All that equipment and this little strange bassinet under a heat lamp. The equipment formed a wall. The couch was behind it by the window. There we sat. If Peter heard me, he cried. Mostly, he slept. I could do nothing for him. I felt useless, and helpless, and in a trance.

I cannot remember how many days we were in the ICU. I remember we moved to the 5th floor, and it was hard there. Hard to eat, hard to pump, with a baby who did not want to be put down. P visited me every day when my husband returned to work.

Eleven days. It is hard to imagine that was all. It felt so very long. How the days dragged on. And the tears came and came and came. Then the day I walked.

We were home just one week. And then we were back. To the 5th floor again, and blood work. Within 20 minutes we were back in the ICU. I gasped, “I didn’t know he was so bad…I would have taken him…I would have taken him…” I could not have known. He is asymptomatic when his sodium drops.

We stayed longer. We moved to the Transitional Care Unit (TCUP) when he was well enough. There we found our new home. The familiarity is good. The relationships are good. That my boy is alive…is good. We stayed five weeks.

We have been in and out ever since. I do not know when or if it will get better. We cannot know that. But what I do know, is that Peter sat up today. Somehow, he is thriving. Somehow, he is doing so well. And when we go home, he will move even faster. Life will continue to move forward. We will come back again. We will leave again.

“For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.” (Langston Hughes’ Mother to Son)

Morning Reflection

Eventually, you wake up and things are brighter. And while the trigger was my family leaving, the resolution seems to be time and acceptance to gain my strength back. And then we move forward. They are the “gone days,” the “dark days” and they happen, because we cannot be strong all the time. Yet the sun came out today. I have rested, read, shifted focused to an agreement with my husband that we will trade places this weekend and my professional commitments. None of this made the darkness go away, it went away with tears and the morning, allowing that part of me to breathe, accepting it. We cannot give into the dark thoughts, but it is okay to acknowledge they are there.

Today baby was better, awake, alert, playful, a perfect predictable, sitting-up infant.

What does it take to be at peace? Very little. There are not requirements, special circumstances. Some things help. The flowers from the Farmer’s Market help, but they are not a necessity. Nevertheless, I appreciate the spark of joy.

In the end, what do we have? We can lose everything. What we have left is God. We have to find a way to make that enough. It does not mean I literally hate the things in my life, the people in my life, but that I am detached, that when they are absent I can survive. It does not feel good, but I will live through it. I am not alone.

In the end, life ain’t no crystal stair

Langston Hughes’
Mother to Son

Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor —
Bare.
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
‘Cause you finds it’s kinder hard.
Don’t you fall now —
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.

I could not write this morning. It was too dark. It is hard even now to write. Because I look for hope, and find none. I look for hope for a normal life, for freedom from hospital visits, for a home with my children all together, where my eight-month old son is stimulated by his siblings and not by hospital pumps. Where freedom means being in a field of wild flowers rather than simply walking with my son outside the unit. Where he does no squint outside in the shade but on the beach.

I cannot remember what it is like to be home. Maybe that is why it hurts so bad today. Because my family left yesterday and the emptiness is worse and the darkness more painful.

Of course we will go home. Of course life will not be like this. But it hurts that life is like this. It hurts that the greatest moment of hope today was immunology saying if they find something is not working right with his immune system that there might be a medication that can bolster it. They are working hard.

But we cannot turn back. What other choice would there be? It would be this or it would not be Peter. And he is so beautiful. And he smiled at me before I left the hospital today.

“Don’t you fall now –”

“It’s kinder hard…”

“Don’t you fall now –”

I cannot see any landings or corners. But God, I hope a corner comes soon.

Morning Reflection: Coping when it’s Gone

This morning I found my rhythm. I laid out the children’s clothes last night so I could quietly dress them one at a time when they rise and then usher them out to the playroom where, hopefully, no children would be watching television. They come Saturday and leave Monday. It is never long enough. There are some moments on Sunday when it feels never short enough. But it is always worth it. I see how weak the virtue of patience has grown in me. I remember how parenting three active children did not feel difficult until after the first hospitalization when I was reminded how peaceful and quiet life can be. Even though I snap at them, it is wonderful to be with them.

When they leave, my heart feels empty. The world goes from color to black-and-white; and the only thing that really helps…is to walk. To walk and walk and walk until the emotions and the emptiness fade into the distance, the scenery begins to brighten with color and after long enough, my feet hurt and I am eager to get back to sit down and rest. Then I finish the day as I started, just moving forward.

I do not know if the children know they leave today. They usually leave on Monday, after two nights, but I cannot bear to say the words. I will have to. No, I will have my husband do it. I do not want to see their sad faces. Even if they know, they will be sad. They do not want to leave. The hospital is a place with a wonderful playroom and nurses who are just so interested in them. Family House is a place with new bed, new pictures and a living room of toys and books they have not seen before. It is even better this time, there is a play kitchen. But most of all, we are today, and that hurts the eldest when it is time to leave. And that breaks my heart.

No news came yesterday. No news is very good news. No news means nothing new has grown in the blood cultures. If nothing new continues to grow, the infection may be cleared. If nothing new continues to grow it means I can start counting the days. I will keep counting since the last blood culture, five days…one…two…three…four…five. That would mean Tuesday. Give it an extra day so I do not get too excited. That makes it Wednesday. But I would not usually tell anyone I am hoping for Wednesday because then I will have to tell them when Wednesday comes that it is not Wednesday and they are more disappointed than I can handle. I was just hoping after all. Today is Monday.

Today is Labor Day. My family and I used to go camping on Labor Day. My husband, children and I never really do anything special for Labor Day. They will have a barbecue here at Family House in the afternoon. I hope to eat a hot dog. I have written up my holiday season plans, as I do each year for the fall and winter. For each holiday or birthday I have written a back-up plan, a San Francisco plan, because Easter was just too heartbreaking to be away from home. And I do not want that to happen again.

The last time I saw the saw the ocean here in San Francisco, I felt hope again. B knew it would have that effect so he took me. We went yesterday. God, it was good to see the children enjoy themselves, good to sit with the littlest after the waves scared her, good to not worry about the sand. The sun was beautiful. The walk was beautiful. The waves were magnificent. We sat at a restaurant, paid for too expensive milk and walked back. The best moments with kids are the moments when you do nothing, when you sit and just let them be, watch them, stop them from picking their noses, and break up the fights with a teaching moment.

The goodness of the moment overwhelms me. My husband is making steak and eggs for me. It is overwhelming to be so loved. Everyone has their crosses. I suppose God gave us the grace in our relationships so that we could face what the outside world would throw us. We just take what comes; embrace the chaos; wish we had worn sunscreen and cope with it when its gone.

Morning Reflections: Flowers along the Path

What many thoughts go through my mind. I handed my phone to the Dr. P who attempted to speak with the staff member from the other hospital. A while later I heard the summary, “not candida,” as in, do not panic…thank God!…”we’ll try to treat through the infection”…for now no surgery. Candida is yeast. Candida Lucitania is the the yeast we all fear, the yeast that would have meant scanning his entire body looking for where it is hiding. He so much more active than before. Without the pacifier, this would be torture to him. Not candida.

The beeping is driving me mad. His tube keeps getting twisted so it keeps beeping. This is out of the ordinary. It is after lunch and after lunch is when I take my leave of him. I tell the nurse I am going to leave so I do not break the pump (the beeping pump). The kids comes tonight. I will leave at 5:30pm so I will take only an hour leave. Thus the overall time I am absent is not too much. Each step is calculated in this way, because I cannot be away from him.

I will take my book and read in the sunshine even though the clouds have not come out yet. I recall my morning reflection and that talk about the sun coming out and anticipation dying down. It has not. How deep is that meaning?

I did not read St. Zelie Martin’s letters yesterday so I will read them today. I will take Don Quixote with me in case I grow weary of reading letters, but it is unlikely because she is dying of breast cancer, but she is praying for a cure!

The letters I read, while sitting in my park among the flowers, are filled with urgency as she seeks a pilgrimage, as she prays for a cure. She goes to Lourdes and it is exhausting and full of trouble. She is not cured. Zelie continues to hope.

I feel like she walks along side me. I am not dying of breast cancer. I do not have thoughts racing through my mind about how my children need me just a little longer and how since they need me, perhaps God will not take me.

Or do I?

Hoping that God would allow her to stay just a little longer. She does not pray for a complete cure, just a few more years to help her Leonie. Zelie’s faith and courage: she takes nothing for herself. Her children are her purpose; they are the reason she moves forward. She owned a successful business but found her reason for living was life with her husband and children.

I walk along the path and it hits me how God has answered our prayers. Yesterday in my conversation with Mrs. G, the topic about thanking God for little victories came up. We’ll take what we can get, she said. This is a little victory. Not removing the Broviac means two less surgeries, at least for now, or at least in the big picture. And we can continue to pray. We do not have to pray for great and global things, although God could surely answer those prayers as well, but he will answer in the little ones. Or at least he will help us to get through.

So what it is then? Flowers along the path, the little things along the way, the prayers answered. It is hard to understand the ups and downs, one minute up, the next minute down. But maybe it is only hard when one expects a cure, or for it all to end. I stopped thinking that way at the onset of the third hospitalization. We will drive ourselves mad with that: when will it be over? It will not. I mean, one day it will be different, but it will never be over. Accepting that is the first step to sanity. The next step if finding things that can be joyful. Those are the flowers. And they are red and purple and yellow and smell wonderful along the path. The sun came out as I read.

Prepare your hearts

We do not know what the future holds. Sitting apprehensively, pondering what our days will hold. Frustrated with the hospital that called with an unclear message that a blood culture is positive. They don’t know what it means to us to find out. It is the difference of going home and staying, possibly staying weeks. It is the difference of getting through something and deciding to adapt, to make a way to live here away from home.

We will have to wait and see. What does the future hold? It is uncertain. But it never was guaranteed. We take it for granted that we will know what will happen until something throws us off the rails, until God laughs at our plans. He does have something better for us. It is just that simple matter of what is actually good? Is not it better that I love my family, that I love my home, that I take nothing for granted? That sitting a table with my husband feels like a date again?

Each room has a familiar scene. I have seen these views before. Yesterday it was the patio and the other windows. Today it is the park. In the past Family House was my peace. Now it is the park. That park with its fragrant butterfly attracting flowers. They say the path forms a butterfly wing, but I am not so sure. Whenever I walk through I make sure to walk around the park as my daughter requested each time we went during the week she was here.

Anticipation hangs on my heart like the fog. What will happen? How long will we be here? How will we manage? Plans start to run through my mind but it is too much to think about. Better to wait and see. I will look out the window at the park, remember the smell of the flowers, and how is makes up for all the other smells of the city.

The sun will come out in the afternoon. Then we will know more. I will go out to the park, sit among the flowers, read Don Quixote and adapt to the news. Ready to take what comes. The resident who is on today saw me at my worse, in my uncontrollable tears, five months ago. The night before I went out for my first walk, my first escape. The sun will come out in the afternoon. I will watch the movie now. I do not have think about it now. It is time for the baby to play.

The Path to Heaven Through Suffering

“That same evening, when the sun appeared to be sinking into the vast stretch of the waters beyond a golden path of light, I went with you to sit upon a lonely rock. I gazed for ages on this path of light, and you said it was an image of the path to Heaven when grace lights up the way.”

St. Therese, The Story of a Soul

Sunset reflected on the sand of the beach
Photo by Harli Marten on Unsplash

His energy was low. It was strange how calm he was during the outing. He spit up once in the car. His eyes looked a little sunken. During lunch we put the clues together. I called the pediatrician knowing the doctor could ease the process of getting labs. I would have to drop the other children off at my parents. They have an opening in 25 minutes. It takes 15 minutes to get there. My husband rushed to shoe and load up the kids while I prepared the diaper bag. I did not think of packing. I did not think of anything except getting there.

99.2, then taking his temperature in a more accurate method…102.

Damn it.

It is rather like a flood. This means San Francisco. This means leaving home. This means being torn apart. This means returning to the desert where we seem to live half the time. This means suffering. This means making arrangements.

Off to the ER.

And then the news that we will be flying to San Francisco. This means no suitcase. This means it gets complicated. Could I go without him in the car?

Having a car sit unused in a garage for two weeks. Complicating the lives of those caring for our children with the back and forth of not having the van. I have the van. The good doctor from UCSF says they will try to make a way for me to have a break. I do not know what he means. Another doctor…another conversation, she is all heart and optimism and she helps keep me going in ways well beyond the call of her profession. They mean for me to be able to go home for a few days. But Baby is very attached to me. He is eight months. I left my eight-month old son to return to work full time three years ago. It hurt him. I can’t do that. They are wonderful here. They love him here. But I cannot take him from the stability he knows of the person he is attached to most.

In the helicopter,

I hear, “PICU” from the flight nurse in the back with Peter. We are in a helicopter. PICU. Is it more serious than I realize. It is bright and hot on my face as we fly west into the evening. The air conditioning is cold on my leg. When I start to feel a moment of panic, I take a deep breath and repeat in my mind “it’s an adventure!” This is my second helicopter ride.

It is beautiful and exciting. We are up over the clouds. Beneath us is a sea of clouds. I take a photograph for my son. I think of St. Therese. If she loved the elevator what would she say of this! I think of the golden path of light above the clouds.

We are in the steady movement of the helicopter and it feels we dive into the clouds. The power of the moment, the magnitude…it is awesome. And we go lower. The clouds turn dark. I think of the dark night…of feeling a separation from the things we love…of feeling torn from home. We are in the dark clouds. We come beneath them. The bay is below us. The sun sets. It forms a golden path of light along the water.

This is the path to Heaven. This way of suffering…of love…of sacrifice. I offer my sacrifice for Joseph and his family.

A nurse in the last ER asked me, “how do you do it?” You just do. You just keep moving forward. Because this is the path to Heaven. To bouy us up, the Lord finds a way to light up the path, to give us hope, and keep us moving on our journey.