Thursday, May 24, 2018

An Overseas Move With My Child With Special Needs

I've been on hiatus from this blog the past few months, for good reason: My family recently moved from the Netherlands back to the United States. 

We made some lovely memories during our 3 years abroad, but ultimately my husband and I felt that we could provide a better life for our 4-year-old son, who has cerebral palsy, in the U.S.specifically, in the Boston area. There, we would have access to more resources in English, including a large variety of English-language speech therapists to choose from, which we just didn't have abroad. 

Plus, we'd have access to top-notch doctors, public education that is more inclusive, and a community of friendly people who accept my son for who he is. (The Netherlands is a lovely country that does indeed have some of these things, just not to the extent that we wanted or needed.)

And so, my husband found a job in the Boston area, we bought our first house, we sold or donated all of our furniture and a significant portion of our other belongings, and in late March, we flew to Boston.

I've been enjoying setting up our new house, and now that we're more settled, I'm excited to get back into blogging. Upcoming posts will include topics such as things I'm doing at home to encourage my son's development, my experiences in the Dutch versus American health care systems, and tips for managing life as a parent of a child with special needs.

Thanks for reading, and until next time!

Thursday, May 17, 2018

The Bright Side of Waiting in the ER


My 4-year-old son went to the ER Monday night.

For the preceding couple of days, he had been refusing to bear any weight on his left leg. I thought maybe he had pulled a muscle, so I took him to a pediatrician Monday evening to get him checked out. The pediatrician couldn't pinpoint a problem and said that due to his complicated medical history, we should go directly to the ER at Boston Children's Hospital, where he could be seen by specialists.

We arrived at the ER around 7 p.m. 

It. Was. PACKED. 

I gave the triage nurse my son's information, and then we waited for his name to be called. My husband arrived, and we waited some more. 

While we waited, two clowns did a little act, and the couple sitting next to us chatted with the strangers sitting across from them. Babies were called back to see a doctor. A child with a feeding tube was called back, too. 

And we waited.

Young children sat next to their parents in chairs or on benches. Most seemed happy, if not bored. They played with their toy computers or talked with their parents or stared transfixed at the bubble wall. My son watched cartoons on the big TV mounted on the ceiling and looked out the window at cars and people going by. People who arrived after we did were called back. 

And we waited.

At one point, my husband said to me, "How do you think this compares to the ER at Johns Hopkins?" (We lived near Johns Hopkins Hospital until our son was 20 months old.)

I said, "Well, we only went there once, and that's when Oliver was a baby. He was seen right away because he was having a shunt malfunction." 

(He has a surgically implanted shunt in his head that allows excess fluid to drain to his abdomen. The shunt got blockedi.e., malfunctionedand he had to have emergency neurosurgery.)

I added, "We never had to wait this long at the ER in the Netherlands either." In the Netherlands, where we lived for 3 years until recently, our ER experiences were almost always quite urgent: Oliver would have seizures that we couldn't stop with his back-up meds and that required extra medication.

This waiting thing was new to me. I'm so used to taking my son to the ER and being immediately rushed to a patient room. 

It suddenly occurred to me that this time, my son wasn't the most vulnerable patient. He wasn't an infant, he wasn't seizing, he wasn't in any noticeable pain. He wasn't the patient who needed medical care the most, and for that, I felt immense gratitude. 

We were waiting because we were lucky.


Finally, after about 4 hours of waiting, we were called back. There were no rooms left in the ER, so we were led to a patient bed in hallway #7. 

The medical staff ran some tests, including hip x-rays and blood work. Long story short: they didn't find anything wrong with my son's left leg or hip. The doctor suspected that his unwillingness to bear weight on that leg was due to a temporary gastrointestinal issue and that he'd be walking again within a couple of days. 

Sure enough, today he's walking.

It was worth the wait.