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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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For other piece in this series, click below: