There is a reliable course I follow to settle back into home following a hospitalization.
First, I unpack. If I do not unpack immediately, it can take weeks. It is so unsatisfying to spend two weeks procrastinating unpacking, finally unpack, and then have to leave again. Better to get it out of the way. In this, I erase all traces that we were gone. I restock suitcase items as needed, put away the suitcase, the bags, and move on. I take the same approach with Peter’s things.
Second, I go on the rampage. I am a territorial woman and my home is no exception. It is best for my husband to be gone when this takes place. It usually looks and feels quite angry. I go about the house putting everything just as I like it, react strongly when things are out of place and look like a madwoman. I do not care how the house is kept when I am gone, but this process is cathartic for me. I come out satisfied, like winning a fight. The house it turned back. It is mine again. All traces of my husband as the housekeeper are gone.
Third, I buy flowers. I arrange flowers. This time, sweet peas are in bloom at my mother’s. I cut a large batch. My six-year-old surprised me with a sweet bouquet because she sees how I love them. We are lucky if I stop at three arrangements. I could do more.
Fourth, I take the kids on an adventure. Today we went to the Farmer’s Market. I could not resist an arrangement of roses and eucalyptus from Kelley Flower Farm.
I added Jupiter’s Beard and Dusty Miller to make it mine. We sampled everything that was not pure sugar. I bought a Jack London book at the book sale. We stopped at a Barn Sale on the way. It was gloriously reckless.
And now I am home. It is mine. I am reestablishing my authority with the kids, and my friendship. I look around and see not just the house I left, but the home I continue to create. My heart is full of gratitude and joy. In these perfectly imperfect moments, my heart has never felt so full.
I often think about how, in some ways, emotionally managing Peter’s condition is easier because I can compare him to my other children. Having other healthy children has protected me from the self-blame, and shown me Peter is learning and growing like a normal, non-medically complicated child. That said, there are many challenges that come with balancing the needs of three children against the need of the one. I’d like to share the lessons learned along the way regarding managing hospitalizations with little ones at home. All the recommendations here may not apply to you, but I hope there will be some gold to glean for you from our experience.
The Family
Get to know your support systems at home. It takes vulnerability to ask for help. As something necessary and good, it is another sacrifice you make for the sake of your family. Accept help when offered. When you have a calm moment, consider making a list of things people could help you with so you can more easily remember things when people make general offers.
Get you know support systems in the hospital: social work, child life specialists, music therapist, and so on. There may be more than meets the eye. It can take a while to learn what is available and see how it may benefit you or your child.
Re-work the spousal dynamic. If you are married or have other people deeply involved in raising your children, take an objective look at what each person contributes to the normal balance. I am the planner. When I am gone, and my mind is occupied with hospital business, I cannot plan for my spouse or children. He and others will have to coordinate plans. It cannot be as I might like it to be. I must learn to let go of this. Every hospitalization, no matter if it is less worrisome than others, is a sort of crisis because the family is separated. In times of crisis, things cannot be just as we would have them. I should not blame my husband if things are not functioning at the same caliber. An entire person is missing from the home dynamic! Learning to accept that is part of finding peace in difficult times.
The Children
Engaging in medical play
There are a handful of things I focus on in keeping the heart of family life pumping even when in my absence.
Maintaining family celebrations
After our Easter fiasco, I was determined to have a back-up San Francisco plan for every holiday. My plans for home would be simple enough to translate should Peter end up in the hospital. As I look back on the past year, I feel this was a gift to our children. Each child’s birthday was celebrated. In fact, we were able to make such a celebration that when it came time for Peter’s first birthday, I could do nothing. He is too young to understand and so I let it go. I reached my limit. I tell myself, “life does not stop when we get to the hospital.” Christmas still comes. Easter comes. Birthdays are a big deal.
Halloween 2016
Routine Family Visits
During Peter’s first admission I put off asking my parents directly to bring the children. Back then, the two-hour drive seemed like a big deal. I should not have done that. When we learned after a week that we would not go home yet, I fell apart in tears, desperate to see my children. We had never been long apart. After that, we agreed to always have a plan of when we would see each other again and to remind the children that plan. “We do not know if Peter will still be in the hospital, but if he is, we will see each other on Saturday.” We never told them when we hoped he would be discharged until it was certain. This approach gave us things to look forward to and hope for, without getting hopes up.
During our visits, we established a routine. We limit the time in the hospital room to keep the kids sane. We go to mass together. They go to the playroom. They know what to expect and are excited to come.
Ice Cream following a Giants game
Communication
My oldest daughter is six. The key for us to was to communicate at an age-appropriate level what was happening. It would do no good to hide it from this perceptive, sensitive little girl. She would know if something was happening, better to tell her and give comfort her. “Fever,” “infection,” “sick,” and “medicine” are common words in our house. “Peter has a fever…the doctors are working hard to find out why he has a fever…they’ll work hard to keep him comfortable and give him medicine…then he’ll stay a little longer until he strong enough to go home.” Something along those lines. For my four-year-old, I might say, “Peter has a fever and we are going to the hospital…but we’ll see you on Saturday.” I keep it focused to what information the child is most likely seeking. When I’m not sure about a behavior from the children, or questions they ask, I contact the Child Life Specialist for advice.
We also talk about feelings. I tell my six-year-old that I am sad to be away from her, I miss her and will be so happy to see her again. I say it is hard when we have to go. I am worried about Peter. I share these things with her and when she shares her feelings with me, I listen or might say, “sometimes I feel that way too.” I have not pushed her away if I cried, but also did not seek her out even though I am comforted by her hugs.
She is part of the equation, even though I should like to shield from all the pain. Though she feels what is happening, we never put on her the responsibility of keeping the family together. She could engage or disengage, cry or play, however, she responded, was welcome.
In order to do this for the children, I have to do my best to take care of myself. It is very difficult in times of crisis to step outside myself and talk to the kids, but I try.
…
Parenting is a thousand little moments. What happens today will not define my child’s future or who he or she is bound to be in the future. So I can fall short a little today. It is the thousand little moments added together, not the individual moments, that count most. And for whatever influence the lesser moments have, there are greater moments that are equally, if not more, powerful than those.
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.
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.
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.
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
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.
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.
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.
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.
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.
Managing a hospitalization with little ones at home
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.
From Psalm 121:
I lift up my eyes to the mountains; where is my help to come from?
The LORD will guard you from all evil;
he will guard your life.
The LORD will guard your coming and your going,
both now and forever.
…
You must keep to what you have been taught and know to be true (2 Tim 3:14)
…
We returned Saturday. I cannot write when I am home…too busy living.
God protects us. We know him to be love, to be good, to be faithful.
Instead of asking “God why are you doing this?” I can take out the question, and in the running dialogue, replace it with “We don’t know why this is happening.”
As a reminder that we cannot always find the reason why we experience the suffering we do. Why do I have three perfectly healthy children, and then Peter, who will have many many problems with his health as his electrolytes become easily unbalanced? We do not know.
Why the timing of all these things?
Why did my husband break his foot?
It there some cosmic book written, dictating these things, “it was meant to be” or is it chance, the chaos of a fallen world? Did he really just step off the ladder wrong?
We cannot know. We know God permits things to happen. We know God works all things for good for those who love him. We know God is love.
I knew I could marry my husband because I could see in his love for me the way God loved me. Now I find I am learning how to love God through crisis by my love for my husband. When we fight, the thing that always cools the heat is the reminder that we are on the same side. It is not me against my husband.
So it is with God. God wants good things for us. He just knows more about how to bring it about.
If I start there, then I can begin to see all the incredible ways God is helping us. The confluence of events that actually work to make things easier, not harder. The passes for the Academy of Sciences at Family House, the occurrence of the 6-year old’s birthday on a Monday when my husband does not work, the assignment of the nurse I am most open with to take care of Peter, the ache of the night nurse who loves Peter when something bad happened, the amazing coffee machine someone surprised us that makes me feel so fine, the ease I feel driving in the city when I must drive because my husband’s foot is broken, and the list goes on and on and on.
At a different time I would have heard these readings with bitterness towards God. It would be the great, “yeah, right” that echoes in the heart of so many grieving and suffering when they hear of God’s goodness. I feel I have rediscovered the God of my youth, the God I knew and stayed devoted to but felt far from during these years of marriage.
I do not know what Thursday will bring, or the month or next year or life. I just know Boston will be a good place to vacation because there are experts there on TPN in case anything happens to Peter during a vacation. I look out my window and see St. Ignatius Church on the horizon, across the city, and I feel hope. It was my pilgrimage site during young adulthood, and the little Carmelite convent across from it.
I am not without fear. I’m terribly afraid. But I am still standing. I might crumble inside in a few days. but for now I am standing. We can keep moving forward.
And we did go home. We nearly did. We nearly stayed one more night. One more night was nothing to them, but to me, it was everything.
And here we are. We came home Thursday and it has been a whirlwind ever since. How strange the pace of home from the pace of hospital. It is quiet and methodical in the hospital, strict practice so where we put the diaper after and how to order dinner. I call into a schedule because it gives a predictable course to the day. It makes it feel like a day, rather than an endless series of nothing.
And how the reflection and the mood changes. From loneliness and keeping depression at bay, to impatience and anxiety. In San Francisco I carefully watched my son’s health and communicated to the team. Here, we are the team. My communication is no longer business but personal and I must re-learn how to speak to my spouse and my children. We have to learn how to live together again.
I gather information. I have not been here. I do know the current practices or current reactions. My job was ever to notice the patterns in behavior, report and give my professional motherly opinion on the best course of action.
It feels a little more like drowning, in the chaotic movie sort of way. Not the way drowning actually looks. No, that is how San Francisco feels, when your head just bobs below the water and above the water. Here it’s a panic and a fret and a frenzy. There is just quietly happens and the only way we notice is because I have to keep going and then I start crying. Here I just explode. Here i feel the anger. Here I ask, why God?
An injury in the family, a health concern for myself and then he will not eat orally. When will it ever end?
My two-year old is taking in life with mother. We have to build back our relationship. My four-year old is overly sensitive. My six-year old is desperate for alone time with me, and my approval. My body demands rest. My life demands activity.
Where is quiet and prayer and self-care? I know so well how to take care of myself in San Francisco where there is nothing to think about other than how to take care of myself. Prayer, exercise, writing, art and friendship. These are the powerful tools that keep me going (sprinkled with some shopping).
Prayer. I cannot even imagine. My mind flits from thing to thing here at home. It is so difficult to find the interior quiet. I could go to the adoration chapel. I could bike to the adoration chapel and kill two birds with one stone. But I am so tired. And it is so hard to leave the house unless it is absolutely necessary and I already have to leave for so many things.
Exercise. The tiredness, oh the tiredness. If I could only get on top of that, then maybe I would exercise.
Writing. Here I am. Bully for me.
Art. My home is my canvas. Here it is easier to create than there.
Friendship. We just need to make the plans to make it happen. It can happen here. Because they are here and I am here and that overcomes two obstacles.
Will I just run in circles or actually grow this time?
Time will tell. Let it unfold. The house, interior house, need not get clean in one day. We can go just a room at a time. For now, let us work on the family and living together again. And see some friends. Yes, I much desire to see some friends.
Each time this night comes, I take the long walk back to Family House and ponder in my mind, “is it real?” It hardly seems possible that the day I have waited for will come tomorrow. Preparations have been made, prescriptions and supplies ordered. We have learned to have things shipped to our house rather than the hospital so we can leave. There are the words. We are leaving.
Can it be? I am afraid to hope. I prepare myself that something may happen over night to prevent our leaving. It is always a planned discharge, never a for sure discharge.
But there is it. It will gradually soak in. Maybe more slowly this time because he must stay hydrated tonight and not vomit, or at least, not vomit too much. He is still a baby. Plans have been made to protect him: increase the TPN, give more breast milk with the formula.
Then there is the ethanol lock. A little alcohol at the end of his central catheter to help protect him from those things that find their way into his blood. Could this mean we do not come back for some time?
In the beginning, the likelihood of infection was not great…possible, but more likely to be a normal fever that all kids get. Yet my children have not been sick, not once all summer…only Peter.
Soon infections seemed very likely for him. This is his third. They mean two-week hospital stays. Coupled with other events, we have been here five weeks. Five weeks, that is the length of the “big hospitalization,” the one in the beginning. But that one was five weeks without interruption. Here we had six days at home…six perfect, too short days.
What will fall bring us? How many holidays will we spend here? Or will we turn a corner and have more time home than hospital? I counted the weeks. We have spent four months in the hospital. He is eight-months old. But one day it is going to change.
I reach out and consider grasping at the hope that lies before us. Yet it is a fearful hope. I must accept this as part of life. I can hope to be home. I can dream of being home an entire month. I can dream of being a family again. God, how I would love to be together again.
We were meant for each other. My husband and I need each other. We are the romantic-style marriage. It was written in the stars. I do not believe marriage must be destiny to be successful. Yet, I would be lying if I said I did not think God planned for us to be together since the beginning.
So we must be together…and detached. That is the lesson. Those were the welcoming words Fr. R and I spoke in the hallway of the PICU. “If any one comes to me and does not hate his own father and mother and wife and children and brothers and sisters, yes, and even his own life, he cannot be my disciple” (Luke 14:26). But not hate, I told Fr. R, you can love it…just be detached. He laughed heartily and granted me my point. He experiences his own desert away from home.
Detachment. The first spiritual book I ever read was Abandonment to Divine Providence. My early days were spent reading the Carmelites, Therese and her night of nothingness, John of the Cross and the Dark Night of the Soul. I understood little of it then. How could I? I had never suffered.
God protected St. Therese. She felt he protected some souls in a special way, bringing them up close to him, because they would not be strong enough to endure the path otherwise. I knew I was one of those souls. But we all must come to it eventually. We all must face the Cross. Then he makes us strong.
I have to explore what the Cross is and what hope is. I cannot fall into superstition: that if i pray in this way, he will not go back to the hospital. But it must be trust. It must be personal. It has to contain some notion of Heaven as our home. With a home and family so wonderful, I could love this world so much so I would not want to lose it. I remember thinking that when I held my oldest daughter.
We are on a journey. We must remember that. I am holding the thought. The excitement for tomorrow grows.
A tourist wanders and seeks pleasure along the way
The journey is the destination for the tourist
Not the pilgrim, there are delights, but they are inconsequential compared to the destination
If the delights on the journey do not delight the tourist, the trip was a failure
Not so the pilgrim
Today is the Exaltation of the Cross
How can I exalt the Cross? I feel a great emptiness around me, grasping for relationship. I am alone.
I was raised in the Church but not raised in suffering. So for me Paul says, “How could you be so stupid? After beginning in the spirit, are you now to end in the flesh? Have you had such remarkable experiences all to no purpose—if indeed they were to no purpose?”
We are in exile. I am without a home. I am estranged.
Why minimize the suffering? Let us just say it for what it is.
When I was so young, God worked amazing things in my heart. He brought amazing people into my life. He delighted me with his love.
Now, I am not even old. I am still young, and I shutter to think that I have so many more decades to live. I hope they will not be like this past year.
But he did not draw me out for nothing. He did not woo my heart for nothing. Would I have union with God apart from suffering? In all that consolation, it felt like it. And then I married. And my spouse was my consolation. And my children were my consolation.
Sunday I saw the beauty of my life and my home and my children and my capability. Monday I saw the beauty of my marriage and delighted in my spouse. I saw why I married him. I did not need to write because I did not need courage. Tuesday I saw the delight of the little things and saw past small disappointments. Tuesday afternoon, the disappointments began to grow and it felt heavier on my back. Tuesday evening, I knew something was wrong. “It will never end,” I say inside my heart. “When will it end?” I ask the Lord.
That is something in itself. I pray the traffic will clear. I pray it will end. I pray for the future. There is something much much deeper in my prayers than ever before.
I try to make sense of this and try to find some courage. And our Lady at the Cross is there. Seven years ago this night I miscarried. It was 3am. Since then it has always felt this feast day was for me. I finally have the current volume of the Breviary with me and went online to see the week in Ordinary Time. And there were the readings for the day: The Exaltation of the Holy Cross.
Christ showed us the way.
I do not understand it. I will keep trying.
I laughed last night…heartily and with a friend. God does give consolations. What more can I say? I must not run from contemplating the cross.
