Transitioning to life after admission

I have shared with you my tips on surviving an emergency department visit and a long hospitalization. If you have experienced these things, I am sorry. They are life changing and unquestionably difficult things to go through. If you made it through these experiences, but tragically, your little one did not, with all my heart, I am so sorry. What I write next references adjusting to life at home with your little one following a major hospitalization. It will not reference what it is like to adjust to life after a long hospitalization and loss.

My little 15-month old treasure has had 15 hospital admissions. Of those two were truly frightening, and a total of five were very dangerous. In the beginning, my mind only took in as much information as it could handle, which is why the middle three stays did not frighten me as they could have. But they probably will in the future.

When I drove him home after the second admission (a month and a half long stay) I wrote a poem that focused on the nightmare ending. This was my mindset for the longest time. It was a nightmare and I would wake up. I knew he had a genetic condition. I knew we would return to the hospital. I knew this intellectually.

Emotionally, I felt waves of relief each time we came back and the belief that it was over. We are home now. I felt the jolt soon after when we returned again and again.

This mindset caused me to lose my peace. It took 12 months of our hospital life (which started when he was two-months old) before I learned a new way of looking at it.

We are going up a mountain, hiking on a switchback trail. On one side is the meadow, the sweet relief, the promise of comfort and ease, the time with family, my beautiful home, the good health of my boy. On the other side it is dry and dusty and dead because this mountain is in California and is a volcano. So we walk, back and forth, up, up, up. Some times we face the meadow, some times we face the dry side. But it will change. Whichever side we are on, it will change. This thought brought me peace.

How do you look at the situation? Maybe yours was a one-time admission. Or maybe for you, like us, it is a way of life. Maybe this is your only child. Or maybe, like us, you have other children. Everyone’s story is a little different. I would love to hear what helps you.

All the advice I gave in the last piece on maintaining peace during your child’s hospitalization…apply it here as well. I needed to learn how I can apply the coping skills I learned in the hospital to life at home. With the demands of home, it will look different, but it serves me the same. I walk in the evening when my husband gets home or exercise when I first wake up. I stretch. I read before bed. I try to unplug. I try to eat healthy, feeding myself as healthy as I try to feed my children. I try to avoid the mindset that I deserve this sweet or I deserve this drink and focus on ways that will actually lower my stress. I ask my existential questions and seek out spiritual and emotional support. I talk to my husband. I craft.

The reward at home is greater because I am in my beautiful home that I have lovingly crafted. The joy is greater because I put my computer aside and watch the children march around the house with instruments, and see Peter crawl after them. My heart is fullest at those moments. I know, as he crawls, that he has a g-tube and Broviac under that shirt. I know we will do a dressing change in a couple days and use a syringe to infuse his TPN with vitamins tonight before connecting him to a 1.5 liter bag of mystery stuff that makes him grow and live. It does not matter.

These are the perfectly imperfect moments. Learning to live in and enjoy the moment, coping and caring for myself, staying aware of my interior life as well as my exterior life. These are things I have learned. And each month I may have to learn them all over again. But we keep moving higher. We keep moving forward.

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Surviving your child’s hospital admission, part 2

Last time I shared with you about how to care for your emotional, volitional and intellectual needs. Today we move forward, considering how to care for your physical, social, and spiritual needs.

Physical Aspect

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Christopher’s Books, Portrero Hill, San Francisco, 1/2 mile walk from the hospital

Maintaining physical health and energy is vital for you to support your child in the way you desire. I recommend focusing on four areas: sunshine, exercise, wise eating and sleep. In serving the intellectual capacity by exploring the neighborhood, you are getting some sun. A full day inside is not good for anyone. Refresh yourself physically by taking a break outside.

Exercise. Talk walks or doing a short exercise routine first thing in the morning. It is important to get your heart rate pumping aside from stress. This will energize you for whatever is to come, and reset you after a hard day. Stretch before bed.

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St. Patricks, Downtown San Francisco, 2 mile walk from the hospital

 

Eat well. You might hear, when someone offers you a sweet, “you’ve earned it.” You are still in it. Telling yourself you are justified to eat unhealthy things for comfort will not help you in the long run. They will zap your energy and give you more calories than you can work off in that little room. Should you treat yourself? Absolutely. But avoid the trap of thinking, “I’ve earned it.” The prize is not a sweet. You are not going through all this for a sweet, damn it. That kind of thinking is a way to cope with stress. Cope with the stress in a way that will actually work. Avoid heavy foods with lots of carbs. Protein, fruit, and vegetables will make you feel better after these long hospital days.

Sleep. If this is your first time with your child in the hospital, leaving the bedside at night might be unthinkable. Your child may be older and scared to be alone. My child was a baby when first admitted and an easy sleeper. You alone can make the decision whether or not to sleep at the hospital. If you choose to sleep away from the hospital, it does not mean you a bad parent or less sacrificing. The hospital is a terrible place to sleep with beeps and interruptions all night long. If you are well rested, you’ll be stronger physically and emotionally to remain present to what happens during the day. Think about it. Sleep on it.

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Bay Bridge, view from the Embarcadero, San Francisco, on my way to the Ferry Building, 3 mile walk from the hospital

Social Aspect

You are here because of your relationship to your child. Try to maintain other relationships you have as well. If you are social, cultivate new friendships by chatting with the nurses, getting to know them and what their life is like. Keep in contact with people who make you feel comfortable, not with people who stress you out. Group updates over email work well for those who want to know the details of how your child is doing. If someone responds with a question, reply to the whole group with an answer because others may wonder the same thing. Have hallway conversations with your spouse or best friend. If you are a repeat visitor learn who is around at the hospital. Find who you like and get along with. I found various individuals with whom I connected and when the additional crisis of a prenatal fatal diagnosis came, I already had a support team. This was also possible because my son has an enormous medical team. Even with a smaller team, you likely see the same nurses, cleaning staff, and food delivery staff over time. Learn their names. It helps.

Spiritual Aspect

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As human beings we also have spiritual needs. We need to feel a sense of purpose and meaning in what we do. The sense of suffering and existential questions may be great. If you feel comfortable, ask to speak with a chaplain. There may be chaplains of different faiths assisting at the hospital. It is all right to ask if one of your particular faith visits.

Please take time to figure out what you are experiencing on the spiritual level. Allow your heart its pain. With each up and down, we can learn to obtain a sense of peace and acceptance of what happens, learning to make the best of it. The alternative is no good. It is better to be at peace. By spending some quiet time considering what you’re experiencing, you can come out of this stronger and better able to handle whatever life throws at you in the future.

The hospitalization of your child is a traumatic experience. I always thought PTSD was only like something a person experiences in war or being assaulted. But really, a trauma is a thing that completely shakes up your understanding of the world you live in, and forces you to reevaluate. We come out different people. Next time, I will share with you my thoughts on how to adapt to life on the other side of a major hospitalization.

For other piece in this series, click below:

Surviving your child’s hospital admission

Part 1

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Baby’s first hospital admission

If your Emergency Department visit concludes with admission to the hospital, there are ways to make the best of it. The first eleven days we spent in the hospital felt longer than all the months after. The age and severity of your child’s needs influence how much you can engage in the advice I share with you. I’ll break this post into two parts.

Caring for your child

Caring for your child may be the easy part because your instinct is to put your child first. While it may feel like an incredible loss of control have your child admitted to the hospital, you are still the parent. You know this child best and your input matters.

The greatest gift you can give your child is your bond. Remaining present, helping to create a stimulating environment, and comforting him are your priceless gifts. Your touch, your smell, your voice soothe this child even if it seems like your baby only cries harder when he hears you. The very fact that your baby responds to you differently than others is a good sign to providers of the baby’s overall wellbeing.

You are also capable of seeing the subtle changes in your child that doctors and nurses may not notice as they do not have the history or quantity of time you have with this little one. Share changes you see with the nurse, but even if you have already told the nurse, request to speak to the doctor or resident, particularly if the changes are concerning.

Regarding stimulation, it is possible to request that if you are not in the room, that the television remain off. You can ask if there are toys in the hospital, a playroom, music therapy, volunteer baby-holders to help normalize your child’s day and exposure. Maintaining a schedule like you would at home can be helpful (for your sake as well). The importance of this varies based on how well your child is and his age.

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Maintaining a stimulating environment

Caring for yourself

The reality is that if you are sleep deprived or burnt out, you will have a difficult time doing the things you want to do for your child. You have to take care of yourself.

How to do that? Consider the various aspects that make up who we are: emotional, volitional, intellectual, physical, social, and spiritual. These parts are all integrated to work in you like a mobile, kept in balance. The maintenance of one helps maintain the others. The neglect of one can throw the others out-of-whack.

Emotional Aspect

Keep an eye on your emotions. You may feel depressed, helpless, angry, or hopeless. Or you may feel numb. Hospitals generally have a social worker on call you can check in with in order to care for your emotions. In this the emotional crisis of your child being in the hospital, focus on other areas can help regulate the deranged emotions.

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To keep it together we planned regular weekend visits

Volitional Aspect

Volition refers to the will, to making a choice. The situation is out of your hands and so you must decide how you will respond to that. Sit back and let it all unfold, or take an active role? When you take an active role, whether in creating a more nurturing environment for your child, participating in morning rounds, or giving yourself a break and leaving the room, you help move your heart away from the helpless state. Feeling in control of something helps us function better and mitigates the temptation to ask, “what more should I have done?” You will know you did all you could because you see yourself, now, doing all you can.

Intellectual Aspect

Maintaining your intellectual side can be difficult, especially in a fancy hospital with a great channel and movie selection. As easy as it is to get caught up in watching the movies and spending all day online, don’t! Cultivate your intellectual side even though you are bedside with your child. This is especially important for long hospital stays. Your life does not stop because of the present crisis. Maintaining intellectual curiosity can help keep you feeling like you are living life and not just surviving.

How to do this? Read. If you have no books, find out if there is a library in the hospital or near by. Read online, but because there will be likely be many hours spent with technology, I would encourage you to unplug and engage with real life paper. Learn new hobbies. There are many little crafts you can try while in the hospital. Explore these. Ask friends to put together kits so you can learn new skills. If you dislike crafts and are more technically minded, learn from your computer, research how hospital equipment works. If you are language oriented, learn a new medical term with each hospital stay. There is something for everyone.

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Travel set of water colors and books to help my sanity

If your child is mostly asleep make a schedule for yourself to keep you grounded.

Get curious about the neighborhood of your hospital. Ask nurses and doctors about safe places to walk and explore during the day when your child naps. Learn the history of your city. Taking a break to get outside will refresh you mentally, especially after a morning spent holding a crying baby.

Next, we’ll discuss how to care for your physical, social and spiritual needs.

For other piece in this series, click below:

How to survive the ER

For other piece in this series, click below:

After spending nine hours in the Emergency Department (ED) yesterday, I feel it worthwhile to share with you…

Staying comfortable in the ED with a baby is an art form.

Here are my tips. They will not apply to everyone or every situation, but they have been good for me.

Arrival

  • Do not feel embarrassed over comments that you have brought a lot.
  • Bring a lot.
    • Bring diapers, wipes, and baby clothes. When you need a diaper you need it right away.
    • Bring food for yourself and food (as needed) for baby.
    • Bring a laptop, iPod or internet phone. I find there is too much noise and baby-comforting to focus on a book and electronics help with this. Magazines are good, too, because baby can play with the pages.
    • Bring chargers for your devices. Five hours of texting updates drains the battery.
    • Bring a handful of toys and comfort objects.
    • Bring a rosary. If you decide to pray, the physicality of this sacramental will keep you grounded. Staying grounded to reality is the way to make it through a panic attack.
    • Bring a shirt, pair of underwear, and pair of socks, just in case your kid is destined for a chopper ride and you cannot take much with you. The hospital you arrive at will have soap and a toothbrush.
    • I have found these items to be essential and even with the emergency that takes you in, it is worth it to gather or have someone gather these for you.
  • Stand by the door after you check in. Protect your baby from whatever other people in the waiting room may be breathing out. Holding your baby’s blanket next to his or her face helps as well.
  • If this is your first time to the ED with your baby try to stop your thoughts from spinning in the I-can’t-believe-I’m-bringing-my-baby-to-the-hospital whirlwind. Focus on the here-and-now.

Getting Settled

  • When you are led to your room, assume you will live here forever. Get comfortable!
    • Use doctor’s stool as a footrest. You can use it. The can get more.
    • The doctor’s stool is also fun to sit on because it rolls and spins. This never gets old.
    • Ask for water.
    • If you are okay with sitting up, ask for a crib. You will rest easier knowing your baby cannot fall out of the bed.
    • If you want the option to lay down with your baby, keep the bed in the room. Line one side of the two-foot wide bed with every bag you have because those rails are useless for a baby.
    • If your baby is a newborn or small, you may be able to keep the bed and ask for a bassinet. At a 2am visit, this would be a great option!
    • Ask to have the pole on the same side you like to sit on so you can stand up and soothe baby without being too tightly tethered.
    • Ask to adjust the lighting.
    • Ask for the location of the call button. You will not always get a tour of the room before they abandon you in it.
  • Know that the ED is in a time warp and time slows, stretching one minute to 30. Do not expect to see the doctor who said he would be right back until at least two hours (your time), (four minutes once he leaves the room).
    • Change positions often. Stand. Sit. Lay down.
    • Ask to use the bathroom. It will not be hard to find someone to stay with your baby because that baby is so cute.
  • Ask for food early, before you are ready to faint. They usually have sandwiches or bizarrely flavored mint pudding or really terrible trays.
    • Ask for water.

Surviving the Hours

  • Be the favorite parent/patient in the ED.
    • Be nice to your nurse. He or she knows where the coffee is.
    • Play fun music so your room is the most cheerful room.
    • Remember your nurse’s name. Use it.
    • Smile if you are able, say please and thank you. If you are emotionally able, expand the compliment to a specific thing the nurse is doing well or that you appreciate. It is good manners. It also helps improve service, as well. You are more likely to get a nurse who lingers if you are pleasant, adding to the opportunity to ask questions or voice concerns you had not thought of during the swift interactions.
  • Assume they will tell you nothing of what they are doing. If they do voluntarily, that is a plus.
    • Ask for what tests the doctors plans to do and how long it will take those tests to result. Otherwise, they may not tell you, depending on the modus operandi of the particular ED and doctor.
    • Write down questions if it is difficult to remember them during the flyby checks.
    • Ask, “Do you really need that much blood?” Labs seem to be known for wanting a luxurious amount to work with. It is unlikely they will put a normal healthy baby at risk, but if you have a baby with special medical needs, hold on to that blood.
    • If you use medical jargon, you will get respect more quickly.
    • Do not hesitate to ask why. Why are you running this test? Why are you not running this test?
  • Know your limits. It hurts to see your baby hurt. You are human, too.
    • You can leave the room if a procedure is too painful to watch. You can stay for any procedure you choose.
    • Keep your mind occupied. Along with the time warp, the numbing quality of the beeps, strange lighting and smallness of the room will make you lose your mind. Approach it as you would solitary confinement.
    • Pray the rosary.
    • I do not know if this was allowed, but the nurse allowed us to step outside the doors where the ambulances pull up. It made all the difference for my morale and patience during the last hour to get some sun and fresh air. This was an option because my baby was not tethered by any tubes and was stable. We were only waiting for transport.
    • Ask for water.
  • Above all, guard your mindset. A three-hour visit to the ED is pretty good. With the time warp, that is like being in and out in an hour, very impressive. It only feels like three hours because it actually is three hours.

 

It is okay if the distress of what is happening makes it too hard to function, to ask questions, to learn anyone’s name. Do what you can for your baby and yourself. Still murmur those “please and thank you’s” because the staff really is doing all they can. It is okay to leave it to them.

It takes practice and strength to intervene and ask the question. It takes time to develop the strength. It is okay to use all the strength you have to just hold your hurting child. If you have to do this again, likely you will be even stronger, and can take on a little more. With each difficult time, you can grow stronger.

People may tell you are strong, but you feel weak. We start out weak. It is okay to acknowledge that. If you guard your thoughts from the destructive whirlwind, if you talk yourself out of blaming yourself, you will get through this standing. If you leave this experience on your knees, you still got through it. Some times, that is our only comfort. You survived.

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For other piece in this series, click below:

Do not let your hearts be troubled

Last Monday I was in turmoil. The fear of the unknown sent me spiraling downward. I could not talk or pay attention my children. I was just grateful my husband was home. I went around in a trance if I was not avoiding my son all together. He was sick, but likely with a cold, nothing I recognized as too dangerous, but we don’t call him “Sneaky Pete” for nothing.

And the next day he was fine. Monday afternoon I felt like I was being hit in the head with a 2×4 of my trauma: the trauma of what happened one year before, the trauma that happened one week before, the trauma that happens when the first time you see your baby you know she is dead. The fear paralyzed me.

And then he was fine. Nothing happened, nothing changed. His labs show he is a little more dehydrated. His doctor is trying to figure out why he is losing fluid, but we passed a normal week at home with him crawling around the place like he owns it, eager to follow and find his siblings who run so fast.

I reflected on this. I was so afraid. My reaction was so big and so out-of-control. I lost all peace I had. I need to learn how to stay cool when these things come up. It is exposure therapy. If I work through the worry, I will learn to not let the trauma control me. The words, Searching for and Maintaining Peace, came to mind. I have that book. I picked up that book.

The author writes, maybe the goal of spiritual combat is not to be invincible and victorious. Maybe, for those who seek to follow the will of God, it is to maintain our peace in all things. We are weak enough. At times, we will fall into temptation, sin, make mistakes, but God calls us not too worry too much. He calls us to pick up and keep moving. Isn’t this just what God has been asking, that at each turn Peter takes, that I adapt and maintain peace to get through it? Isn’t that the project I saw with each new set of bad news, with each return to the hospital? We move back and forth, requiring more and more flexibility, more and more understanding that we are not looking to flip the switch and wake up, but simply to turn the corner and keep moving.

So he threw up this morning and I am waiting for the doctor to call me. But Peter is playing and all signs point that he is probably okay. We will cover our bases. I can stay calm and attentive in this. The fear of the unknown need not paralyze me. I will keep walking.

Easter Plans

We have such a day planned! I spent Holy Saturday in a delicious frenzy putting into motion plans that had been swimming in my mind for months. Early this year I made bunting using a stained thrift-store crocheted table cloth, cut into triangles and sewn by machine to two-inch baby pink grosgrain ribbon. I made two, one for the fireplace mantle and one for the bay window behind our dining table.

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I went to the garage and carried in the dusty box of Easter decorations. Inside I found a mess or artificial flowers, some ceramic Pottery Barn rabbits and bird’s nests, lots of bird’s nests!

Inspired by Pinterest and Pottery Barn I used the longer flowers to create a wreath around the dining table chandelier.

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I placed our newly-made table cloth (courtesy of my mother’s surging machine and dedication to making endless supplies of table clothes and napkins for everyone she knows), and covered the seam with a table runner bought on a whim in my first year of marriage. My father supplied disks of almond wood from his orchard and the flowers came from Kelley Flower Farm in Modesto. With this plan it came together quickly and beautifully.

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After decorating the house, we decorated Easter baskets using ribbon, hot glue and artificial flowers from the dollar store. They call the shots, I stick and glue. The children set them out at night and find them filled in the morning.

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I anticipate the kids will wake, discover the Easter Baskets and ravage the poor things. Bowls of cereal will await the hunter-gatherers. Then we’ll head to mass and return for egg hunting. To eat, we’ll start with Easter Brunch at our house.

Brunch Menu

Cucumber and tomato salad

Berry citrus Fruit Salad

Breakfast strata

Italian Easter bread

Raspberry Sorbet

After naps we’ll move to my parents house, where my introverted husband will prepare dinner.

Dinner Menu

Deviled eggs

Carrot Ginger soup

Roasted Green beans with caramelized pecans

Rack of Lamb with pomogranete and fennel glaze served with St. Francis Cabernet Sauvignon

Farmer’s Market Strawberries and three-year aged cheese

Crème Brulee

 

Easter Joy

I took care of myself yesterday. I exercised in the afternoon, walked in the evening and read at night. I walked three laps around the park in order to clear my head from the afternoon onslaught of crying and screams from hell-bound ruffians, I mean, my blessed little children. Emotional survival is such a process until the very exciting comes along. And the exciting has come along.

One year ago ’twas Easter. We abandoned our plans and our menu to try to make it work in San Francisco. Peter had been there so long already. By the generosity of the Mark Hopkins hotel company (Intercontinental, I think), we were going to stay for free in a fancy hotel for Easter.

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Kyle and the kids came. That week the kids decorated baskets with Grandma and everything came together.

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I bought delightful little goodies at Williams-Sonoma combining retail therapy with indulgent motherhood. It all felt good.

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It is difficult to stay in one room with a bathroom from the 30’s with five bodies, three of which move a lot. It was cramped, but we would be positive! This was such a gift after all. The kids went to bed. Kyle and I stayed in hallway waiting for them to fall asleep. We filled the baskets and went to bed. We thought, surely in a place like this, nothing will happen to those baskets.

Naive little out-of-town small town country folk. The kids woke and the baskets were gone. I went crying to the hotel management and she apologized, sent security to search the halls and came to our room with a basket filled with cookies, candy and teddy bears. They found the kids’ baskets and we made quick work to tell them the Easter bunny had gotten confused because we were in a hotel. Their ages made this possible.

Easter mass at St. Dominic’s was beautiful. We sat in the choir loft and saw such a view of that grand Church. As positive as I tried to be, I felt heart-broken. For whatever we did with the kids to make the day feel special and like Easter, it was incomplete. Peter was not with us. I cannot remember the rest of the day. I felt tired of trying, tired of pretending we could make this day anything other than a spiritual reference in our heart to the meaning of it all.

I would not be caught off guard again. I made plans for every holiday and every birthday should any of the rest of them take place when we were in the hospital. When did we return? Lots of times. But around the holidays?

Shortly before Miriam’s birthday party (I missed the party but we were together on her birthday). All Souls’ Day (November 2 = home for Halloween). The day after Thanksgiving. The week before Christmas (returned home on the 23rd). The first half of Holy Week.

We went Regina’s birthday in San Francisco. The lesson came home to me that day. The imperfect moments become perfectly imperfect, when we are all together. It does not matter that it is cramped, or undecorated, or improvised, so long as we are together. We are connected to Celeste by the invisible string. Tomorrow is Easter…and we are all together!

Time to take steps

When we returned home from the hospital I had to rest. I had to cope. I had to keep it together. After drinking too much a few nights, I wanted to find other ways to cope. The key ingredients for a day of sanity consisted of

  1. Licorice Tea
  2. Reading David Copperfield
  3. Reading Cut Flower Farm
  4. Walking
  5. Planning projects

Bonus activities were

  1. Arranging flowers
  2. Completing projects
  3. Talking with my counselor once a week

For three weeks, I focused on myself, made possibly by my husband’s leave from work. My six-year old and I went through Celeste’s things every night the first week and a few times the second week. She did not ask the third week.

Week four I attended mass by myself and prayed deeper than I had praying in a long time. I asked God for help, for…something. I do not think I knew what I was asking for in that moment. I suppose that makes it all the better.

Then came the grace. I saw in my mind’s eye Christ and my daughter together. I felt close to her again even though her body was in the ground and her soul was beyond space and time. It is because her soul is beyond space and time that I could feel close to her. That is the communion of saints.

The next day, Thursday, I read to my children. On Friday, we prayed the Stations of the Cross at home. I felt attentive to them. I felt I could take their needs into my mind and parent them. It felt amazing. On Saturday I think we went to the farmer’s market. I don’t remember exactly…

 

Because on Sunday at 5am, Peter’s temperature was 103. I packed and rushed him to the hospital. My husband stayed behind to prepare the children. We arrived in San Francisco at UCSF around the same time, Peter and I in an ambulance, my husband with the kids in the van.

When they left Tuesday morning and I knew we would stay, I had to explore what I need to do to keep myself going. I once longed to go back to San Francisco because there I knew how to cope. Peter was safe there. Now I longed to be home, because there I knew how to cope. I felt safe there. It was time to erase the geography from the equation and take to heart the words of my counselor: the ability to do this is in me.

I walked. I read. And I wrote. There was such joy in writing again…and fun. I walked. I read. I wrote. I worried. Peter grew worse and so I wrote more. I could not control the situation, so I explored it in my heart through the thin veil of fiction.

Peter grew better. I forgot the steps that helped me because of the joy I felt in his energy. We returned home soon after.

Time to learn again. Time to pick up the book I read daily at the hospital. Time to write again. Time to pray again. I think this will make me more flexible. It will make me more happy. So much of it is simply the decision to do. It is a decision to do the things we know we should but feel too lazy to do. The temptation is to vegetate or numb, but that does not help. It is time to take steps.

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The Story of our Year: a eulogy

At the end of her funeral, Kyle and I walked to the front of the Church and, in front of our family and friends. There , we shared the story of our year, a eulogy for Celeste Casey. I want to share that story with you now.

Man cannot truly find himself, except through a sincere gift of self.

We learned from John Paul II that to love truly is not only to will the good of the beloved but also to be willing to give of oneself, to sacrifice oneself, to that end. There is no title or status change when a parent loses a child. Until recent history and place, parenthood was synonymous with loss. Indeed it still is. From birth when they are no longer protected in the womb, to the first time they fall, to the two-year-old insistence that only one parent may help with shoes, to the four-year urge for independence “I can do it myself” to the age when they really and truly can. Or, more painfully, the first illness, the first injury, the first hospital visit, and the first terrible day when you think of what could have happened, and thankfully did not.

A year and a half ago, we faced for the first time, the knowledge that a child of ours would have a birth defect. Following the birth of Peter, we faced our first NICU visit, first ER visit, first long hospital stay, first fear of losing our child, first surgeries, first inherited genetic mutation, and first understanding that this could have happened with any of our children and future children. But we also faced our first cleft smile, which is the biggest and brightest full-faced smile you can imagine, first easy going baby, first baby to self-soothe bringing some much needed nighttime relief. No cup of suffering came without the relief and joy of meeting this boy and knowing him and living with him in our family.

We were changed by these early experiences.

Armed with the strength of the previous year, we learned of a diagnosis much worse than what we already knew. At 18 weeks pregnant, I could see the sonogram images were not as they should be. Our baby girl had anencephaly, a condition that develops in the early weeks of pregnancy, in which the child does not grow a brain. In my womb, she could continue to grow to full term, be born naturally, and then pass peacefully away. Guided by the Catholic Church’s teaching, we came to understand her life should not be cut short. Over the course of pregnancy Celeste Casey became part of the fabric of this family. “Celeste in mommy’s tummy” entered the canon of toddler speech. To their joy or bewilderment, the older children felt her kick. We experienced an even greater outpouring of love then we had already known.

There has been much grieving in this family this year. In the summer, the loss of a Grandma P, who lived a long-lived life surrounded by 3 children, 13 grandchildren, and many great-grandchildren. In the winter, the untimely death of our brother, Trevor, a man full of potential and love. And now it is spring, and now the death of Celeste who went from the peace and security of the womb straight to the arms of the Father to join her two other siblings lost through miscarriage. With the saints of God, she will pray for this family, she will care for us, as we ached to care for her.

Richard John Neuhaus wrote, “At the heart of darkness the hope of the world is dying on a cross, and the longest stride of the soul is to see in this a strange glory… The cross is not the eclipse of that glory but its shining forth, its epiphany.”

Death on a Friday Afternoon by Richard John Neuhaus

There is no title for a parent who has lost a child.

The grief that comes with faithfulness is built into the definition of mother and father.

We will walk forward in the mystery of life with the joy and suffering that it brings, and will one day, in the hope of God, find meaning in it all.

Parents hold fingers of baby girl

Auld Lang Syne

Should old acquaintance be forgot,
and never brought to mind?
Should old acquaintance be forgot,
and old lang syne?

For auld lang syne, my dear,
for auld lang syne,
we’ll take a cup of kindness yet,
for auld lang syne.

Have you heard this tune before, called “Auld Lang Syne”? In the old films you can see the characters singing together on New Years Eve at the sound of the midnight chime. Everyone knows the words.

For more modernity, you can hear Harry in When Harry Met Sally asking the question, “What does this song mean? My whole life, I don’t know what this song means. I mean, ‘Should old acquaintance be forgot’? Does that mean that we should forget old acquaintances, or does it mean if we happened to forget them, we should remember them, which is not possible because we already forgot?” Sally understands. “Anyway, it’s about old friends,” she says with tears in her eyes.

“Auld Lang Syne” does have its traditional place at the conclusion of New Years Eve gatherings. With the cheer and revelry of embracing the New Year, we find a haunting tune drawing the listener to consider old friends and old relationships. As we age, this is the stuff that really matters. “No man is a failure who has friends,” Clarence writes George in It’s a Wonderful Life.

The song is used powerfully in the 1932 film, The Divorcee, a movie about regret and relationships. The past cannot be undone, but they can move forward with eyes opened wide. Old relationships do not have the shimmer and shine of new relationships, or the naiveté. Your oldest friends or family members have likely seen you at your best and your worst, yet still they choose to be in your life. There is power to that stripped down openness. The strongest relationships keep in mind the storms and the dark times and still find some life to continue going. George Bailey was no saint, but he was loved.

This is the strength of old acquaintances. There is always more to learn about a person. Human beings are ever changing. The past and present coexist in a person, as well as the potential for the future. The mark of suffering never fully disappears. The griever learns to live with his grief. The friend of these is the one who is aware of the suffering, the grief, and yet can still smile, still laugh, being present with this person wherever he or she is at, and hope for a better tomorrow.

Another tradition of New Years Eve is the symbol of Baby New Year and Father Time. The baby quickly ages to become Father Time by the end of the year and passes on the reins to the new Baby.

We can carry this sense of continuity in our reflection of the New Year. There is a passing from one to the next. We look back at the time in 2016, and hope for better things next year, better decisions. I hope we can also look back with gratitude at a handful of things, but suffering varies by year. Whatever your state, hold on to those old friends, seek them out if need be, and prepare yourself to step forward into a fresh start, to make of it whatever you will.