I remember sitting in the NICU day after day feeling like I was the only person in the world who knew what I was feeling. Even when surrounded by other families, my own family visiting, and countless medical professionals, I felt completely alone. Other than my husband, Casey’s dad, I did not think anyone out there knew what I was going through.
We begged to get connected with other families. But due to HIPAA, the staff were not able to help much.
This was before social media and smartphones. We would go home at night and Google every term we heard that day. We would search for local support groups, ways to connect with other families. After about 2 months, we finally got to take Casey home. We still had not found any support in the area at all.
Many more months went by. I continued to fall deeper and deeper into a very dark hole. I was doing everything I could for Casey, but I felt so isolated. My husband had joined a Yahoo listserv for families of babies with Hypoxic-Ischemic Encephalopathy (HIE). He convinced me to join as well. That lasted about a month. Everyone was so depressing and negative. It only made the darkness I was fighting worse.
One good thing did come from my very short time with this group. One of the other parents sent me a link to a poem called "Welcome to Holland." Oh, my gosh! I read the words and clung to each one. It was as if they wrote this poem just for me.
This was a huge deal. This was the first time I ever felt like there was someone else out there that understood me. I loved this poem and remember saying many times that it should be hung in NICUs everywhere.
The first few times someone sent me this poem I would smile, thank them, and tell them how much I loved it. Over the years, I was handed this poem more times than I can count. Dozens of variations to this poem were also passed around. I do still think the poem is lovely and a great source of support for people early on in their journey.
But after about the 10th time, I started to grow very torn about how this poem made me feel. Talking with other parents, this seems to be a natural progression with many of us. Regardless of how you feel about Holland, if you know a parent just starting out, it may be worth sharing. (I’d suggest not sending it to the veteran parents that are years in though.)
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.