Photos of the Week (with a mini-home tour)

I spent the week in San Francisco with Peter just sight-seeing (wishful thinking). Actually, we spent four days in the hospital, his first admission in 5 1/2 months. It was a virus which caused repeated fevers, but for this little guy with a Broviac, it means we must go in

A Strange Year

It was a strange year. On one hand, we experience the greatest sorrow imaginable in our young lives, our child died. The first quarter of the year was filled with a deep sorrow. After she died, I looked around and asked myself, what is life to be like now? In

How does it feel to be home?

How does it feel to be home? Well… The long answer: I go from being afraid for his life to seeing him run down the hallway, squealing at his siblings’ antics. I go from him being watched by brilliant medical professionals to being the primary eyes on him. I go

How I settle in at home

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

Managing a hospitalization with little ones at home

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

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

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 Maintaining physical health and energy is vital for you to support your child in the way

Surviving your child’s hospital admission

Part 1 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

How to survive the ER

For other piece in this series, click below: How to Survive the ER Surviving your child’s hospital admission, Part 1 and Part 2 Transitioning to life after admission Managing a hospitalization with little ones at home After spending nine hours in the Emergency Department (ED) yesterday, I feel it worthwhile

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,

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